Community Planning Tool: Applying a Health Equity Lens to Program Planning This program planning tool is designed to support organizations or agencies who are delivering health programming within communities. This tool provides a guide for each stage of planning in order to apply a health equity lens to the work, including assessing capacity and engaging with community members, and supporting resources.
SourceFraser Health Authority
CategoryDesign
Language AvailabilityEnglish
Country
Publication DateMarch 2018
#HowTo Engage Patients This resource contains insights from 77 patient partners and different organizations from both within and outside of Canada. The site contains tips and suggestions on how to meaningfully engage patients, starting at the beginning with why engagement is important, who a patient is, common engagement mistakes and how to avoid them, considerations with technology, and facilitate accessible conferences. Tips about payment and compensation are also provided, with background reading, patient engagement research, templates and tools, and a calendar of relevant patient engagement events.
SourceCrowd Sourced from Twitter Thread - #HowToEngagePatients
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryCanada
7 Tips for Working with Patient Advisors in Co-designThis video gives healthcare providers 7 tips for working with patient advisors in co-design. The tips can be implemented in any engagement initiative.
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateMarch 2017
A Coming Together of Health Systems: First Nations Traditional Practitioners in Acute Care SettingsThis video and discussion guide aim to:
- Increase the understanding of the role of Indigenous traditional healing and the work of Indigenous traditional practitioners
- Encourage the integration of traditional healing into the health care plans of Indigenous patients
- Support positive health care experiences through a culturally competent care framework
The discussion guide provides a starting point for discussion amongst the key stakeholders, healthcare professionals from acute care settings, traditional Indigenous practitioners and Indigenous patients, to ensure patients receive culturally meaningful and relevant care. It also includes additional resources to further the understanding and incorporation of traditional healing into the acute care setting
SourceVancouver Coastal Health, UBC Faculty of Medicine Digital Emergency Medicine (DigEM), interCultural Online Health Network (iCON)
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateFebruary 2016
A Guide for Implementing Person and Family-Centred Care Education across Health Care OrganizationsThis guide provides a framework for designing, implementing and evaluating patient- and family-centred care (PFCC) in a long-term care facility. It highlights the importance of engaging clients, residents and families at different stages of the initiative to ensure it reflects their needs and preferences. By constantly communicating with residents and families, an organization is able to reinforce their commitment to improving their experience. In addition, the guide provides sample worksheets and questionnaires to further facilitate implementing PFCC using four key elements:
- Workshop Content Development
- Train-the-Trainer Sessions
- PFCC Workshops
- Evaluation
SourceSaint Elizabeth Health Care
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateMarch 2016
A Guide for Patient and Caregiver Advisors
A guide for patients who wished to be involved in quality improvement. This resource includes the types of questions you can ask, and important things to know when engaging for quality improvement. This guide is helpful for patient partners who are new to quality improvement and provides useful suggestions for getting involved.
SourceHealth Quality Ontario (HQO)
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
A Guide to Capturing and Using Patient, Public and Service User Feedback EffectivelyThis resource is a comprehensive guide on the effective commission, analysis, and use of patient, public, and service user feedback. It follows a study previously commissioned from Health Services Management Centre at the University of Birmingham on the use of real-time methodologies and technologies to capture feedback.
The guide opens with a discussion of the value of feedback and how it fits into patient and family engagement. It then offers guidance on each step of the feedback process: engaging and collecting, designing and undertaking, and using and integrating. The guide discusses the pros and cons of various feedback methods, including face-to-face interviews, paper-based methods, hand-held devices, kiosks, bedside terminals, telephone interviewing, online questionnaires, and online communities and members' panels.
SourceNHS Institute for Innovation and Improvement (NHS Institute)
CategoryAssess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateAugust 2009
A Guide to Community-Centred Approaches for Health and WellbeingThis guide sets out a conceptual framework for working with communities, and summarizes the different types of interventions available as well as signposting key research. It includes an evidence scan and catalogue of examples for building "confident and connected communities" for social health and well-being, as well as better healthcare delivery. Attention is paid to capacity development, especially for disadvantaged communities.
The report discusses:
- The rationale for working with communities
- How community life is a major determinant of health and key concepts
- The family of community-centred approaches
- An overview of the evidence base, outcomes and economic issues
- Conclusions and implications for local leaders and commissioners.
SourceNHS England
CategoryDesign
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateFebruary 2015
A Guide to Developing a Patient Panel for Clinical AuditThis resource is a step-by-step guide on developing a clinical audit patient panel that involves patients, people who use services, carers, and members of the public in order to achieve effective and meaningful patient and public involvement in the clinical audit process. The guide covers approval (including drafting a business plan and conducting a risk assessment), recruitment, training and educating the panel, establishing patient panel responsibilities, involvement, and communication, and includes an action plan template.
SourceHealthcare Quality Improvement Partnership (HQIP)
CategoryDesign
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateOctober 2012
A Guide to Having Conversations About What MattersThis resource provides tools for both health care providers and patients on facilitating meaningful conversations about what matters to patients in their care. Conversations about what matters to patients help to promote patient-and family-centred care, trust, understanding, and allow for the care received to be aligned with patient wishes and preferences. The tools include tips for providers on how to ask what matters to patients, active listening and doing what matters. Tips for patients, family members, and caregivers include preparing for the question, sharing what matters to them and tips on partnering in care.
SourcePatient Voices Network, BC Patient Safety & Quality Council (BCPSQC)
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateMay 9, 2018
A Guide to Your SurgeryThis guide provides essential information patients, families and caregivers need to become active and informed members of their surgical care team. It provides information, planning checklists, tools, and other resources to facilitate decision making, preparing for surgery and recovering as quickly as possible.
SourceFraser Health Authority
CategoryImplement, Assess
Language AvailabilityEnglish
CountryCanada
A Leadership Resource for Patient and Family Engagement StrategiesThis leadership resource gives hospital and health system leaders concrete, practical steps grounded on evidence-based research to improve patient and family engagement in their organizations. The resource is split into five steps:
• Develop a Clear Vision: what your hospital could like when staff, physicians, and leaders fully engage patients and families
• Determine opportunities to improve your skills, knowledge and confidence
• Develop a plan and prioritize it to achieve patient engagement goals
• Monitor your progress
• Provide ongoing implementation support
Drawing from the American Hospital Association (AHA) report Engaging Health Care Users: A Framework for Healthy Individuals and Communities and the Agency for Healthcare Research and Quality (AHRQ) resource Guide to Patient and Family Engagement in Hospital Safety and Quality (both available on the Hub), it focuses on the leadership role of ensuring that engagement strategies are successfully implemented and sustained.
SourceAmerican Hospital Association (AHA)
CategoryMonitor & Evaluate, Implement, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateJuly 2013
A List of Ontario Health Care Acronyms: For Patient and Caregiver AdvisorsThis list is a compilation of common acronyms and their meanings used across the Ontario health care system. This list is a reference tool for patients, families and caregivers as they engage with healthcare providers.
SourceHealth Quality Ontario (HQO)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
A Patient and Family Advisory Council Workplan: Getting StartedThis check-list provides recommendations for newcomers to the field of patient engagement seeking to implement a patient and family advisory council. It offers specific guidelines and suggestions to get started.
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryMonitor & Evaluate, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateOctober 2010
A Practical Guide to Self-Management SupportThis guide provides an overview of self-management support and how to empower people to build the knowledge, confidence and skills they need to make the optimal decisions and actions regarding their own health and wellbeing. It also provides key components for effective implementation of self-management support.
SourceHealth Foundation
CategoryImplement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateDecember 2015
A Roadmap for Patient and Family Engagement in HealthcareThe patient and family engagement roadmap is intended to present a vision for patient and family engagement in healthcare as a means to accomplishing the triple aim of better experiences of care, better population health, and lower costs. The roadmap lays out eight strategies for change, each accompanied by a series of specific tactics to accomplish the change and milestones to measure and mark improvement. The strategies are:
• Patient and Family Preparation
• Clinician and Leadership Preparation
• Care and System Redesign
• Organizational Partnership
• Measurement and Research
• Transparency and Accountability
• Legislation and Regulation
• Partnership in Public Policy
SourceGordon and Betty Moore Foundation, American Institutes for Research (AIR)
CategoryAssess
Language AvailabilityEnglish
CountryUSA
Publication DateSeptember 2014
A Toolkit for Working with Family CaregiversDeveloped by United Hospital Fund, this toolkit aims to improve patient care and satisfaction during transition between healthcare settings. It is broken down into five sections:
- The Basics (Caregiver identification and assessment)
- Medication (reconciliation and management)
- Discharge Planning
- The Transition
- Closing the Communication Loop
Although focused on chronically or seriously ill patients, the tools can be adapted to any patient in healthcare setting.
SourceUnited Hospital Fund (UHF)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Accelerating Healthcare Improvement: CFHI’s Assessment Tool for Healthcare Delivery Organizations and SystemsCFHI created this assessment tool to help healthcare leaders assess their organization’s or system’s capacity to undertake improvement initiatives. Through assessment, this tool will help your organization or system:
• Identify improvement expertise, assets, and strengths;
• Build improvement capacity, and;
• Take the next steps for healthcare improvement
The tool is based around six levers for healthcare improvement:
• Focusing on population needs
• Engaging healthcare providers and front-line managers in creating an improvement culture
• Building organizational capacity
• Creating supportive policies and incentives
• Engaging patients and citizens
• Promoting evidence-informed decision making
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryAssess
Language AvailabilityBilingual
CountryCanada
Publication DateJuly 2011
Achieving Patient Experience Excellence in Ontario: An Idea BookThis collection of case studies from different organizations across Ontario provides different strategies for improving the patient experience. Collaboration and communication between patients and families and healthcare providers are the most common elements in the strategies presented. This idea book should be used to inspire others interested in undertaking similar projects which will improve the patient experience. The studies are separated into five areas of improvement:
- Advancing High-Quality Care
- Caring for At-Risk Patients
- Engaging Patients and Families
- Enhancing Communication
- Improving Access
In addition, each case study had to answer each of the following questions:
- What was being improved?
- Why is it important?
- How did it work?
- Was it successful?
- What were some key tactics?
SourceOntario Hospital Association (OHA)
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Publication Date2013
Acute Care Unit-level Patient Experience SurveyThe acute care unit-level patient experience survey is a standardized questionnaire that captures the experience of care from the point of view of the patient. The survey is designed for individual acute care units to implement on their own as part of their efforts for improving patient experience.
This survey was developed by Saskatchewan Health Quality Council (HQC) in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative
SourceSaskatchewan Health Quality Council (HQC)
CategoryMonitor & Evaluate, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Addressing Global Patient Safety Issues: An Advocacy Toolkit for Patients’ OrganizationsThis toolkit, for healthcare providers, assists in building partnerships with patients and families, advocating for safer care, providing information for patients and raising awareness of patient safety issues. The toolkit, with appended tools and case studies, is separated into ten sections:
- Medical Error
- Taking Medicines Correctly
- Hospital Acquired Infections
- The Quality and Safety of Medicines
- Injection Safety
- The Reuse of Single-Use Medical Devices
- Maternal and Child Health and Safety
- Patient Participation in Clinical Trials
- Advocacy and Partnerships
- Communications
SourceInternational Alliance of Patients' Organizations (IAPO)
CategoryDesign
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateAugust 2008
Admission Volunteer Ambassador EvaluationCo-designed with patients and families, the Volunteer Ambassador program at Bruyère aims to provide excellence in care by improving the admission process and creating a safe and caring welcome to new patients and families. This tool, completed by a patient, family member or caregiver, evaluates their experience during the admission process. Organizations can adapt the tool to evaluate their current admission practices.
This tool was developed by Bruyère Continuing Care in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative. SourceBruyère Continuing Care
CategoryMonitor & Evaluate
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Advance Care Planning Workbook Ontario Edition This advance care planning workbook was designed by Speak Up Ontario to help further person-centred health decision-making in healthcare, and provides patients and families with information about the importance of advance care planning to ensure their values, wishes, beliefs and goals are integrated into their care. Tools and forms are included in the workbook for patients and families to begin conversations about their advance care planning with their healthcare providers.
SourceSpeak Up Ontario - Hospice Palliative Care Ontario
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Advancing the Practice of Patient- and Family-Centered Care in HospitalsThis resource provides a starting point for hospital leaders seeking to advance the practice of patient- and family-centered care (PFCC). It includes the following parts:
• A rationale for PFCC in hospitals
• Steps hospitals can take and practical suggestions to get started
• An assessment tool
• A case study describing one hospital leader’s experience implementing PFCC
• The criteria for the American Hospital Association’s McKesson Quest for Quality Prize
• Practical guidance for beginning the process of identifying, recruiting, and sustaining the involvement of advisors
• A tool for gathering information about the perceptions and attitudes of staff and administrative leaders
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryImplement, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateOctober 2015
Advancing the Practice of Patient- and Family-Centered Care in Primary Care and Other Ambulatory SettingsThis resource provides a starting point for healthcare leaders to advance the practice of patient- and family-centered care (PFCC) in primary care and other ambulatory care settings. It includes the following parts:
• A rationale for a PFCC approach to primary and ambulatory care
• Steps an organization can take to begin creating partnerships with patients and families
• An assessment tool
• Practical guidance for beginning the process of identifying, recruiting, and sustaining the involvement of advisors
• A tool for gathering information about the perceptions and attitudes of staff and administrative leaders
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryImplement, Assess
Language AvailabilityEnglish
CountryUSA
Publication Date2016
After-Action Review Technical GuidanceAn After-Action Review (AAR) is a leadership and knowledge sharing procedure designed to facilitate honest feedback and critique by participants and coordinators following a program or event. It involves a planned and facilitated professional discussion that engages all members equally. AARs aim to answer four questions:
• What was expected to happen?
• What actually occurred?
• What went well, and why?
• What can be improved, and how?
Developed by the US Army as a successful tool for evaluation and improvement, AAR’s can be used following any improvement initiative, project, or community outreach event to provide a thorough self-evaluation of the strengths and weaknesses of the activity and how it can be improved. The AAR provides an opportunity for leaders, staff, and partners (e.g. patient and family advisors, staff liaisons, and healthcare providers involved in the coordination and the planning of the event) to reflect honestly on the successes and drawbacks of the event to rapidly assess areas of improvement. Unlike a formal evaluation, the process is short – no longer than an hour and a half – and is intended to be an immediate and engaging learning event for all involved.
This document outlines the full process, and gives a thorough description with accompanying tools to plan for, prepare for, conduct, and learn from an AAR.
SourceUSAID Knowledge for Development
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateFebruary 2006
Alberta Health Services Patient Engagement: Patient Safety ResourcesAlberta Health Services’ “Safer Together” campaign partners with patients and families in providing safe, quality care through the healthcare system. The patient safety resources – a brochure, poster and video - are intended to engage patients actively.
SourceAlberta Health Services (AHS)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
All About Me BookletThis booklet, designed for people living with dementia, is a template for creating a personal record of a patient’s background and what is important to them throughout all stages of the disease. The booklet engages patients, families and caregivers with the healthcare provider in completing the questions in the booklet and educates the provider of the patient’s needs.
SourceAlzheimer Society of Canada (ASC)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication Date2012
Always Events Blueprint for ActionIHI created this roadmap to assist healthcare providers in using “Always Events” as a tool to improve patient-centered care. It outlines the four phases of “Always Events” and key elements - leadership, patient and family partnership, team engagement and measurement - needed for successful change.
• Phase 1: Identifying an Always Event
• Phase 2: Developing and Implementing the Program
• Phase 3: Evaluating the Program
• Phase 4: Sustaining the Momentum
This resource is free of charge; however, it requires you to create a login.
SourcePicker Institute, Institute for Healthcare Improvement (IHI)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateDecember 2012
Always Events Getting Started KitThe Getting Started Kit is used to understand Always Events and the steps necessary to ensure an optimal patient and family experience with improved outcomes. It guides users how to implement the four foundational elements of an Always Event – leadership, patient and family partnership, team engagement and measurement. In addition, this kit includes two case studies of organizations who have successfully implemented Always Event initiatives.
This resource is free of charge; however, it requires you to create a login.
SourceInstitute for Healthcare Improvement (IHI)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateFebruary 2014
Always Practices - Bedside HandoverThis video shows healthcare providers and patients engaging during a bedside handover. Transfer of accountability occurs at the bedside to include the patient. Engagement at the bedside allows patients and their families to ask questions regarding their care plan and know who to contact if need be.
SourceCanadian Patient Safety Institute (CPSI), Bruyère Continuing Care
CategoryDesign
Language AvailabilityEnglish
CountryCanada
Publication DateOctober 2015
Always Practices - Hourly RoundingThis video introduces healthcare providers to a step-by-step approach in conducting hourly rounding; a best practice where the nursing staff see their patients hourly to determine if they need assistance. It shows four categories of questions healthcare providers may ask patients during the hourly rounding process:
- Pain
- Personal Items
- Position
- Toileting
This proactive approach provides an opportunity for healthcare providers to engage with patients every hour, thus reducing patient safety incidents and improving overall care.
SourceCanadian Patient Safety Institute (CPSI), Bruyère Continuing Care
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateOctober 2015
Always Use Teach Back!As part of Picker Institute’s Always Events, Always Use Teach Back is a campaign that assists patients in being an active participant in their own care. Patients are engaged to repeat their care instructions using their own words to confirm their understanding. This resource includes additional documents for communicating with patients and staff to support the Teach Back method. Additional information on the Teach Back toolkit can be found at http://www.teachbacktraining.org/
This resource is free of charge; however, it requires you to create a login.
SourcePicker Institute, Institute for Healthcare Improvement (IHI)
CategoryMonitor & Evaluate, Implement
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
An integrated approach to identifying and assessing Carer health and wellbeing This resource provides information for healthcare providers to identify, assess and support carer health and wellbeing, promotes working together, and the development of an integrated approach to identifying, assessing and supporting carers and families across health and social care. The resource provides clarity around the language used to describe caregiving, and identifies positive practices to support carers, focusing on those from vulnerable communities, during key transition points, and reducing health inequities.
SourceNHS England
CategoryDesign, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateMay 2016
Ask Me 3: Good Questions for Your Good HealthThe “Ask Me 3” campaign assists patients in being active members in their own care by encouraging them to ask three questions every time they engage with a healthcare provider:
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
In addition to an implementation guide for educating healthcare staff, the campaign created a flier, poster and video to introduce patients and their families to the program and encourage effective engagement using the three questions.
SourceInstitute for Healthcare Improvement (IHI)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
At the heart of health: Realising the value of people and communitiesThis report brings together a range of person- and community-based approaches in improving health and wellbeing across three dimensions:
- Mental and physical health and wellbeing
- NHS sustainability
- Wider social outcomes
The report focuses on five areas of work in enhancing the quality of life of people:
- Peer support
- Self-management education for patients and families
- Health coaching
- Group activities to support health and wellbeing
- Asset-based approaches in a health and wellbeing context
Each area of work includes organizational improvement examples.
SourceHealth Foundation
CategoryImplement
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateFebruary 2016
Become a Kingston General Hospital Patient Experience Advisor BrochureThis brochure helps prospective advisors understand the role of a patient experience advisor at KGH by answering the following questions
- Is being a patient experience advisor right for you?
- What is a patient experience advisor?
- Why should you become a patient experience advisor?
- Who can be a patient experience advisor?
- What do patient experience advisors do?
SourceKingston General Hospital (KGH)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Bedside Shift Report Video for Internal StaffThis video, for healthcare providers, shows the patient and family experience framework being used during a bedside shift change. It allows for staff and patients’ needs to come together in co-creating the care and services delivered within the organization. Discussing the four steps of the bedside shift report – situation, background, assessment, and recommendation (SBAR) – at the bedside, engages the patient and their family to ask questions, clarify information and ensure the patient care plan meets their needs.
This tool was developed by Huron Perth Healthcare Alliance (HPHA) in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Patient and Family Engagement for Quality Improvement Collaborative.SourceHuron Perth Healthcare Alliance (HPHA)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Bedside Shift Report Video for PublicThis video, for the public including patients and family members, shows the expectation during a bedside shift change report and its steps– situation, background, assessment, and recommendation (SBAR). Using the patient and family experience framework, the report allows for patients and family members to engage with healthcare providers in asking questions, clarifying information and ensuring the patient care plan meets their needs. In addition, the report reduces anxiety and stress level for patients because they are aware of what is expected that day and can plan accordingly. The bedside shift report allows for meaningful engagement between patients and their families, and healthcare providers.
This tool was developed by Huron Perth Healthcare Alliance (HPHA) in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Patient and Family Engagement for Quality Improvement Collaborative.
SourceHuron Perth Healthcare Alliance (HPHA)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Being an Effective Change Agent This session is focused on building knowledge and skills for leading change in an organization. It will also explore how you can manage organizational energy as a change agent, in addition to your own energy as a patient partner. This resource will help to build skills for patients, families and caregivers looking to enact change.
The goal of this workshop, which is offered intermittently, is to:
- Articulate the value in being an organizational change agent
- Utilize framing and storytelling approaches to build alliances
- Recognize the importance of thought diversity
- Analyze resistance to inform strategies for change
- Discover ways digital and social media tools can support change processes
SourceBC Patient Safety & Quality Council (BCPSQC)
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Better Together: A Change Package to Support the Adoption of Family Presence and Participation in Acute Care Hospitals and Accelerate Healthcare ImprovementThe Change Package is a guide for developing family presence policies that welcome and recognize families as partners in care. It takes a broad approach to change from the development or adoption of new policies to their implementation, evaluation and spread. The document is divided in three phases (assessment and initial review; adoption and formulation of family presence policy and practice; implementation, sustainability and spread) and each phase contains resources, steps, ideas, examples and tips.
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateNovember 2015
Beyond Consultation: A Guide for Health CommissionersThis resource provides advice and guidance for projects seeking a deeper level of engagement with users in order to shape services. Particular emphasis is placed on addressing the needs of seldom-heard groups. It offers lesson from previous experiences of work in this area and outlines key steps in an effective engagement process. Each step of the engagement process offers a checklist, outlines effective methods, and addresses potential challenges.
The guide was developed by Panos London out of their three year engagement project, Beyond Consultation, which aimed to improve the uptake of sexual health and HIV services in South East London.
SourcePanos London
CategoryMonitor & Evaluate, Design, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateMarch 2012
Blood Thinner Pills: Your Guide to Using Them SafelyThis booklet, supplemented with a video, provides patients taking blood thinners an overview of the function of blood thinners and information for correctly administering them to prevent blood clots from forming. The booklet also includes tips on diet, medicines, important precautions for some daily activities, and when to seek help.
SourceAgency for Healthcare Research and Quality (AHRQ)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateSeptember 2015
Briefing notes for researchers This resource contains ten briefing notes for researchers on how to involve patients and other members of the public in their research. Topics covered include: What is public involvement in research, why involve members of the public in research, how to involve, recruiting the right participants, different roles, and what to do if things go wrong. The briefing notes also include detailed information about specific types of research and specific involvement activities, case studies of real examples of public involvement in research, and templates of different documents that may be useful such as job descriptions.
SourceNHS National Institute for Health Research (NIHR)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Budgeting for Engagement ActivitiesThis resource outlines the importance of budgeting for involvement of patients and caregivers when designing research and engagement activities. Various considerations for researchers and other professionals when designing and budgeting for research are outlined, including: compensation and recognition, partner expenses, project staff, engagement events or meeting costs, and incorporating feedback.
SourcePCORI
CategoryMonitor & Evaluate, Design
Language AvailabilityEnglish
CountryUSA
Publication DateJune 2016
Budgeting for involvement: Practical advice on budgeting for actively involving the public in research studies This guide provides an overview on budgeting for the involvement of patients, caregivers and the public in research. It applies to different types of research, such as focus groups and in developing the budget for an entire study, and has important implications for designing research with the patient perspective in mind. Several examples of different levels and mechanisms of involvement in different research projects are used to provide context for organizations looking to both build and budget for involvement in their research.
SourceNHS National Institute for Health Research (NIHR)
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateJune 2013
Building the House - the House of Care ToolkitThe House of Care describes four interconnected elements for achieving person-centred, coordinated care for people living with long-term conditions and their carers. It provides a framework for assisting both healthcare providers, and people and carers in co-designing a personalized support plan, resulting in the best outcomes and experiences for the individual. The toolkit also includes relevant guidance, published evidence, case studies and information for people and their carers. Although focused on people living with a long-term condition, the framework and appended tools can be applied in other healthcare settings.
SourceNHS England, Coalition for Collaborative Care
CategoryDesign
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateN/A
Cadre de référence de l'approche de partenariat entre les usagers, leurs proches et les acteurs en santé et en services sociauxAvailable in French only
The Cadre de référence de l’approche de partenariat entre les usagers, leurs proches et les acteurs en santé et en services sociaux (Framework for a Partnership Approach Between Patients, Families and Professionals released by the Ministry of Health and Social Services and the Health and Social Services Network) aims to guide patients, families, professionals and managers in establishing a partnership approach within the Ministry of Health and Social Services (MSSS) and the Health and Social Services Network (RSSS). Il also defines the benchmarks for the development and renewal of a partnership approach. Patients and families, various stakeholders within the RSSS and MSSS, as well as partner organizations will find this document useful as a reference tool to better understand the partnership approach. It will allow them to play an active role in implementing and sustaining the approach while respecting patients and families’ willingness and ability to engage.
SourceMinistère de la Santé et des Services sociaux
CategoryImplement, Design
Language AvailabilityFrench
CountryCanada
Publication DateMay 14 2018
Canadian Incident Analysis FrameworkThis framework provides strategies for individual and organizational learning, as well as quality improvement, in response to a patient safety incident. Although the overall theme is quality and safety improvement, the patient/family perspective, written by a group of patients and families, assists healthcare providers with communicating with patients and families during a safety incident. The patient and family perspective is applied in each phase of the framework:
- Before the incident
- Immediate response
- Prepare for analysis
- Analysis process
- Follow through
- Close to loop
The resource also includes supplementary tools to assist you at each phase.
SourceCanadian Patient Safety Institute (CPSI)
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication Date2012
Canadian Patient Experiences Survey — Inpatient CareCIHI has worked with representatives from Canadian jurisdictions, in particular the Inter-Jurisdictional Patient Satisfaction Group, and other leading experts in the field to develop a standardized questionnaire that enables patients to provide feedback about the quality of care they received during their most recent stay in a Canadian acute care hospital, as well as standards and supporting documentation for those who are administering the survey:
•Canadian Patient Experiences Survey—Inpatient Care (CPES-IC)
•CPES-IC Procedure Manual
•CPES-IC Data Dictionary Manual
The survey base is the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey, which is already used in several provinces and in the U.S. and other countries. The survey also includes Canadian-based components that address areas not covered by the HCAHPS tool such as, Internal coordination of care and Person-centred care.
SourceCanadian Institute for Health Information (CIHI)
CategoryAssess
Language AvailabilityBilingual
CountryCanada
Publication DateMay 2014
Carers ToolkitNHS England and its partners have developed a toolkit to help health and social care organizations work together in identifying, assessing and supporting the wellbeing of carers and their families. This toolkit covers new duties on NHS organizations brought about by the Care Act 2014 and the Children and Families Act 2014 and includes numerous examples of positive practice that are already making a difference to carers and their families. Some of the positive practices included in this document include supporting the identification and registration of carers in primary care and assessing the support needs of carers in order to maintain and/or improve their physical or mental health. This toolkit can be used as a resource to help promote working together between Adult social care services, NHS commissioners and providers, and third sector organizations that support carers, with a specific focus on developing an integrated approach to the identification, assessment and support of carers and their families across health and social care.
SourceNHS England
CategoryImplement
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Change Management Toolkit: Leading Change in HealthCareThis toolkit provides approaches and tools in implementing a change in digital health projects. Included in this resource is a framework which provides direction in the following categories:
- Governance and Leadership
- Stakeholder Engagement (including staff, patients, families, professionals)
- Communications
- Workflow Analysis and Integration
- Training and Education
- Monitoring and Evaluation
SourceCanada Health Infoway
CategoryMonitor & Evaluate, Implement
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Changing the Concept From Families as “Visitors” to Families as Partners ToolkitThis toolkit provides the resources necessary for staff, leaders and families to change the views of families as visitors to partners in care. Included in the toolkit are
• Advisors (Role in Change)
• Assessment of Hospitals
• Bibliography
• Education of Staff
• Exemplar Hospitals – Profiles
• Facts & Figures about Family Presence
• Guide for Families: Pock & Expanded
• Guide for Staff
• HIPAA Privacy Rules
• History of “Visiting” Hours
• Metrics
• Policies (Examples)
• Poster: Together
• Press Release (Sample)
• Security (Role in Change)
• Strategies for Changing Policy
• Videos
Sourceinstitute for patient, Institute for Patient- and Family-Centered Care (IPFCC)
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateFebruary 2015
Checklist for Attitudes About Patients and Families as AdvisorsThis tool is a short checklist of questions designed to be used by staff and physicians to explore their attitudes toward patient and family involvement. It asks questions about both patient and family involvement in individual care, as well as in advisory roles and/or members of improvement and redesign teams. It can be used for self-reflection and as a way to spark discussion among staff and physicians before beginning to work with patients and families as members of advisory councils, and quality improvement, policy and program development, and health care redesign teams.
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryAssess
Language AvailabilityEnglish
CountryUSA
Publication Date1994
Choosing Meaningful Projects This guide contains templates, tools and resources for patient and family advisory councils deciding what projects to take on, and for establishing goals for each of them. By focusing on specific projects with clear goals that inspire and motivate both patient and family advisors and the people who work in an organization, you can dramatically increase the success of a patient and family advisory council. Use the tips and approaches included in this guide to determine projects or topics of focus, and set goals.
SourceHealth Quality Ontario (HQO)
CategoryDesign, Assess
Language AvailabilityBilingual
CountryCanada
Publication Date2016
Choosing Methods for Patient and Caregiver Engagement: A Guide for Health Care Organizations There are many different methods of patient and caregiver engagement. Different engagement methods can be used for various purposes and engagement projects. This guide provides an overview of different types of engagement, their purposes, and highlights important considerations when beginning an engagement project including: the goals of engagement, access and equity, timelines and capacity, and follow-up.
SourceHealth Quality Ontario (HQO)
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
CIHR's Citizen Engagement HandbookUse this handbook to gain insight on the best practices, approaches and methods that can be applied for effective engagement activities. The handbook covers:
• The citizen engagement decision tree model
• The development of citizen engagement plans
• Tips on enhancing citizen representation on boards and committees
• Advice on knowledge dissemination and public outreach
SourceCanadian Institutes of Health Research (CIHR)
CategoryAssess
Language AvailabilityBilingual
CountryCanada
Publication DateJanuary 2012
CIHR's Citizen Engagement in Health CasebookThis casebook is a useful reference for those wishing to know more about citizen engagement or wishing to facilitate citizen engagement. It highlights fourteen citizen engagement projects from across the health sector in diverse regions throughout Canada. The casebook looks at the methods, process, impact, and lessons learned in each study.
SourceCanadian Institutes of Health Research (CIHR)
CategoryDesign
Language AvailabilityBilingual
CountryCanada
Publication Date2002
Clarity of PurposeOne of six briefs outlining themes discovered by teams funded to conduct patient engagement projects.
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryDesign
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Clinical Best Practice Guidelines: Person- and Family-Centred CareThis resource is a template to guide best practices associated with enhancing person- and family-centred care to manage health. It is designed to help nurses and other members of the inter-professional healthcare team, working in partnership with patients and their families, to make decisions about health care and services, ultimately improving clinical outcomes. This resource provides recommendations in three main areas - Practice recommendations, Education recommendations and System, organization, and policy recommendations – and includes links to an implementation toolkit that supports the best practice guidelines.
SourceRegistered Nurses’ Association of Ontario (RNAO)
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateMay 2015
Cognitive Interviewing: A 'How to' GuideThis guide is based on the document “Cognitive Interviewing and Questionnaire Design: A Training Manual,” by Gordon Willis (Working Paper #7, National Center for Health Statistics, March 1994). In revised form, this document describes the cognitive interviewing techniques appropriate for questionnaire development and testing, and which are used by the staff of Research Triangle Institute (Laboratory for Survey Methods and Measurement, Research Triangle Park, NC; Cognitive Research Laboratory, Rockville, MD).
The cognitive interviewing approach to evaluating sources of response error in survey
questionnaires was developed during the 1980's through an interdisciplinary effort by survey methodologists and psychologists.
SourceNational Center for Health Statistics (NCHS)
CategoryMonitor & Evaluate, Assess
Language AvailabilityEnglish
CountryUSA
Publication Date1999
Communication and Optimal Resolution (CANDOR) Toolkit Communication and Optimal Resolution (CANDOR) is a process that healthcare organizations can use to respond in a timely, thorough, and just way when unexpected events cause patient harm. This toolkit is separated into eight modules , with appended tools, and an implementation guide for assisting in engaging staff, patients, and families in the planning, implementation and evaluation of the CANDOR process.
• Module 1: An Overview of the CANDOR Process
• Module 2: Obtaining Organizational Buy-in and Support
• Module 3: Preparing for Implementation: Gap Analysis
• Module 4: Event Reporting, Event Investigation and Analysis
• Module 5: Response and Disclosure
• Module 6: Care for the Caregiver
• Module 7: Resolution
• Module 8: Organizational Learning and Sustainability
SourceAgency for Healthcare Research and Quality (AHRQ)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateMay 2016
Communications in health care improvementThis toolkit, for health care professionals, provides strategies in understanding and better communicating the planning, implementing and spreading of work in quality improvement. In each step – Planning for success, Getting started, Sustaining interest, and Spreading your work – the toolkit reinforces the importance of identifying the intended audience, including patients and families, and tailoring communications to their specific interests, needs, and motivations.
SourceHealth Foundation
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateN/A
Community Engagement Framework - Vancouver Coastal HealthThis Framework provides a better understanding of the broad practice of community engagement. It offers an overview of how engagement can assist managers and staff in meeting their responsibility to respond to community and patient needs to improve clinical quality and health outcomes. Vancouver Coastal Health (VCH) frames community engagement as a seven step process: Frame, Design, Recruit, Do, Analyze, Implement, Finish. Each aspect is described and discussed and VCH outlines possible ways that each step can be met in order to create a successful system of community engagement.
SourceVancouver Coastal Health
CategoryMonitor & Evaluate, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateMay 2009
Community Engagement Toolkit for Health Service Providers and the Toronto Central LHINThe Community Engagement Toolkit outlines the roles, accountabilities and expectations regarding community engagement, and provides a number of tools to assist health service providers and the LHIN in their community engagement activities.
SourceToronto Central Local Health Integration Network (LHIN)
CategoryDesign, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateMarch 2011
Community Engagement: A summary of theoretical conceptsThis literature review presents a summary of community engagement approaches that target community-based organizations, for the purpose of improving health.
SourceAlberta Health Services (AHS)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Community Health Needs Assessment ToolkitThis toolkit provides a process to conduct a community health needs assessment for rural hospitals with input from a community advisory committee. In addition, it provides recommendations on how to recruit for a community advisory committee.
SourceNational Center for Rural Health Works
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateMay 2012
Community Tool BoxThe Community Toolbox is a vast collection of free online guides and toolkits for community engagement. The Toolbox is divided into sections on developing particular skills relevant to engagement, many of which translate directly to patient engagement. Each section contains extensive guides, a related toolkit, and a collection of resources. Particularly relevant guides include Communications to Promote Interest and Participation, Building Leadership for Engagement, Group Facilitation and Cultural Competence. The Community Toolbox is available in English, Spanish, and Arabic.
SourceUniversity of Kansas
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Community/Stakeholder Assessment WorksheetThis worksheet helps us explore, in a structured fashion, how will stakeholders be affected by the project/plan/decision? And therefore who needs to be included in the engagement process.
SourceHamilton Niagara Haldimand Brant Local Health Integration Network (LHIN)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication Date2010
Comprehensive Unit-based Safety Program (CUSP): Patient and Family Engagement The Patient and Family Engagement module of the CUSP toolkit explains the role of patient advisors in ensuring patients’ and families’ views are incorporated into hospital policies and procedures. In addition, it provides strategies for engaging with patient advisors in reducing patient harm and communicating an adverse event to patients and family members. The toolkit is comprised of presentation slides, facilitator notes, and videos to improve communication among patients, families, and clinicians.
SourceAgency for Healthcare Research and Quality (AHRQ)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateJune 2015
Connect and CARE Model and ToolsThe Connect and CARE model is an evidence-based model designed to support community pharmacists increase their engagement with patients in community pharmacies. Certain tools, such as “Invite Listen Summarize” are equally useful across a variety of professions in which practitioners communicate directly with patients or customers. This resource briefly describes the Connect and CARE model and provides six tools to aid in its implementation:
• A pharmacist reflection designed for personal use by the pharmacist to reflect on their patient engagement and level of patient satisfaction
• Prescription checks for both new and refill prescriptions: these documents are intended to be given to patients and include a checklist of what the pharmacist will tell the patient, as well as a list of questions or concerns the patient may have, and space to write questions or concerns not included in the list
• An introduction to and advice and examples on using “Invite Listen Summarize:” a communication technique to encourage patient questions and engagement
• A Personalized Medical Information Sheet: a short form for providing the most pertinent information about the drug
• A patient quiz to assess and advise a patient on if they have questions to raise about their medication, or if they may need to book a medication review
SourceCanadian Pharmacist's Association
CategoryImplement, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateMay 2013
Consumer and Community Engagement Framework and Action PlanHCQ’s Framework provides a consistent and overarching structure to guide and support the development of effective consumer and community engagement strategies. The Consumer and Community Engagement Framework comprises:
• A set of nine principles
• A model which describes five elements and four levels of engagement across three domains of health service operation
• A set of practice examples to support effective engagement
SourceQueensland Health
CategoryImplement
Language AvailabilityEnglish
CountryAustralia
Publication DateFebruary 2012
Consumer, Carer and Family Participation FrameworkThe Consumer, Carer and Family Participation Framework provides a guide to adopting a consumer-driven, recovery-oriented, and carer and family inclusive mental health service model. The framework provides direction to Queensland mental health services across the state regarding enhancing consumer and carer participation at a local level.
The framework has been divided into four components. The first three components (Part A - Background, consultation, principles and definitions; Part B – Implementation framework; and Part C – Self-assessment template) guide mental health services on how consumers, carers and families can be involved and participate in all levels of service planning, delivery and evaluation. The fourth component (Part D – Resources) is an overview of resources that services can use to enhance consumer, carer and family participation.
SourceQueensland Health
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryAustralia
Publication Date2010
Co-Producing Services Co-Creating HealthThis guide serves as an introduction to co-production and introduces some of the techniques and process that are used. It aims to stimulate interest and ideas about how and where co-production can support services design, delivery and evaluation and how the principles can be applied at an individual patient level to support management of long term conditions.
Source1000 Lives Plus
CategoryImplement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication Date2013
Core Principles for Public EngagementDeveloped collaboratively with members of National Coalition for Dialogue & Deliberation (NCDD), the International Association for Public Participation (IAP2) and many others, the seven core principles for public engagement reflect the common beliefs and understandings of those working in the field of public engagement, conflict resolution, and collaboration.
This resource provides the principles, the rationale behind them, as well as advice on pitfalls to avoid when implementing these principles.
SourceNational Coalition for Dialogue & Deliberation (NCDD)
CategoryDesign
Language AvailabilityEnglish
CountryUSA
Publication DateAugust 2010
Creating a Patient and Family Advisory Council: A Toolkit for Pediatric PracticesThis toolkit, created with input from patients and family members, provides a step-by-step approach on creating and sustaining a patient and family advisory council as a way to receive feedback from family perspectives in the design of services and improving overall quality in the delivery of those services.
• Step 1: Assess Practice Readiness
• Step 2: Recruit Diverse Patient and Family Representatives as Council Members
• Step 3: Support the Process of Authentic Family Engagement and Involvement
• Step 4: Sustain and Evaluate Your PFAC
Additional tools and resources are included in each step. Although this toolkit is meant for pediatric practices, it can be implemented in any healthcare setting.
SourceNational Institute for Children's Health Quality
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUSA
Publication Date2012
Creating an Effective Terms of ReferenceThis guide contains templates, tools and resource for creating an effective patient and family advisory council terms of reference document. A terms of reference outlines the ways in which a group of people agree to work together to accomplish common goals and is a critical step in establishing a patient and family advisory council. As an important starting point for advisory councils, an effective terms of reference helps to outline council goals, membership and functions. Included in this guide is a template to help you build an effective terms of reference.
SourceHealth Quality Ontario (HQO)
CategoryMonitor & Evaluate, Implement
Language AvailabilityBilingual
CountryCanada
Publication Date2016
Culture Change ToolboxThe Culture Change toolbox, intended for healthcare providers, is a collection of tools for improving the culture in patient safety within an organization. It includes the different components, including:
- Teamwork and Communication
- Safety Climate
- Psychological Safety
- Organizational Fairness
- Just Culture
- Stress Recognition
- Working Conditions
- Leadership
- Learning and Improvement
- Patients as Partners
The components are heavily interconnected and as a result, the tools included often target multiple components. The Patients as Partners section discusses the importance and strategies for engaging with patients for improving the patient safety culture.
SourceBC Patient Safety & Quality Council (BCPSQC)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateOctober 2013
Culture: From Word of the Year to a Driver of Sustainable ResultsThis resource provides a roadmap in creating, planning and applying a culture change with a sustainable impact on results, using the following steps:
- Define a top performance priority
- Identify “how culture plays a role”
- Clarify the improvement vision
- Define specific expected behaviours
- Clarify strategic priorities
- Engage the team to define clear goals
- Define and visibly share measures
- Maintain a management system for priorities and goals
- Manage communication habits and routines
- Build motivation throughout the process
Although this resource is focused on quality improvement, it discusses engaging team members, which can include patients and families, as part of the strategy for improvement.
SourceHuman Synergistics International
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication Date2015
Deliberative Public Engagement: Nine PrinciplesThis document aims to encourage and support deliberative public engagement, which is designed to give participants time to consider and discuss an issue in depth before they come to a considered view. The resource is divided into four sections:
• What is deliberative public engagement?
• What forms does it take?
• When should you use it?
• Nine guiding principles to use in the establishment of deliberative public engagement
SourceInvolve
CategoryAssess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateJune 2011
Demystifying Authentic Patient Engagement: Practical Tips for SuccessThis document features several practical tips for healthcare teams to utilize when authentically engaging with patient partners. A variety of resources on authentic patient engagement principles, preparing patient engagement teams, and guidelines for working with underserved populations have been highlighted to support healthcare teams as they engage with patient partners.
SourceBC Patient Safety & Quality Council (BCPSQC), Patient Voices Network
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Design Planning... Key PrioritiesThis checklist lists the key priorities for involving patients and families in design planning. The list can be used by health organizations to outline or assess their priorities in the creation of a collaborative planning process. Additional information on the design planning process is available on IFPCC’s website under, “Environment and Design” in “Topics.”
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryMonitor & Evaluate, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateOctober 2010
Developing a Consumer and Community Engagement Strategy: A Toolkit for Hospital and Health ServicesThe Toolkit is a companion document to Health Consumers Queensland’s Consumer and Community Engagement Framework (the Framework). It supports the practical application of HCQ’s Framework and contains information, tools and tip sheets to support the stages and steps health service organizations may undertake to develop effective engagement strategies.
The Toolkit supports the development of strategies tailored to meet the purpose of the engagement, and the needs of the consumers and communities within the local area. While it has been developed to specifically support HHSs, the Toolkit also has application across public and private health service organizations delivering health promotion, prevention, primary, acute, sub-acute and community health services. It provides a suite of information, tools and tip sheets to support the steps and processes that health service organizations may undertake to develop effective engagement strategies. The Toolkit can be used to review current consumer and community engagement initiatives, so that organizations can build upon what is working well and identify gaps and opportunities for engagement at the individual, service, network and system levels.
The Toolkit outlines four stages – scope, plan, engage and review, and 11 steps in developing an effective consumer and community engagement strategy. It is divided into three sections to provide a comprehensive resource. The tip sheets and resources in Section 3 have been designed for use as independent resources.
The Toolkit consists of:
• Section 1: Introduction
• Section 2: Steps to developing a consumer and community engagement strategy
• Section 3: Tools and resources.
SourceQueensland Health
CategoryDesign, Assess
Language AvailabilityEnglish
CountryAustralia
Publication DateJuly 2012
Developing a patient and public involvement panel for quality improvementThis guide, for healthcare providers, assists in involving patients, service users, carers, and members of the public in all aspects of quality improvement using a patient and public involvement (PPI) panel. Included are case studies of different organizations approaches to using a PPI panel throughout a quality improvement initiative. Creating a PPI panel provides a method for meaningful engagement between patients and healthcare providers.
This resource is free of charge; however, it requires you to create a login
SourceHealthcare Quality Improvement Partnership (HQIP)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateApril 2016
Discharge Preparation Checklist This resource, completed by patients and families, is a checklist of tasks to be completed prior to the patient’s discharge. It determines a patient’s level of understanding regarding their discharge care plan. In addition, this resource also includes a template “Care Transition Plan” with important information, including follow-up appointments, important contact information, and medication list. The transition plan along with the checklist provides patients with the opportunity to engage with their healthcare provider regarding their own care and safety.
SourceDivision of Health Care Policy & Research University of Colorado Denver
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Disclosure of Unanticipated Medical OutcomesAlberta Health Services (AHS) created several resources in providing support to healthcare professionals in disclosing unanticipated medical outcomes to patients and their families. AHS also included their policy and procedure for disclosing harm to patients and families which can be adapted to any healthcare organization. Within the policy and procedure are elements in engaging with patients and their families throughout the disclosure process. The additional resources describe real life experiences from AHS who have been through the disclosure process and are divided into the following sections:
- Preparing for disclosure meetings
- Communicating with the patient/family
- Supporting patients and families involved in adverse events
- Supporting physicians and staff involved in adverse events
- Coaching and mentoring
- Approaching challenges
SourceAlberta Health Services (AHS)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Disclosure PrinciplesThis list of tips assists healthcare providers in communicating honestly, empathetically, and respectfully with patients and families when harm has occurred. Open communication between all parties allows an organization to learn from the harm or potential harm, which helps improve overall safety.
SourceCanadian Patient Safety Institute (CPSI)
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateJune 2015
Discovery toolkit for Supporting Family Caregivers of Seniors: Improving care and caregiver outcomesThis Toolkit is a rich compilation of experience, expertise and recommendations of a broad-based collaboration of researchers, clinicians and end-users examining the journey/ role/circumstances of caregivers of seniors. It provides an understanding of the nature of support required in order to sustain this ever-growing group caregivers. This collection of findings will be useful to researchers, policy-makers, service providers and instructors of future healthcare workers. The toolkit sheds light on key learnings including the challenges for caregivers for system navigation due to constant change and fragmentation and the economic impact of caregiving.
SourceUniversity of Alberta Covenant Health
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication Date2015
E-Learning: Preparing Participants for Allocating Resources EquitablyPreparing Participants for Allocating Resources Equitably (PrePARE) is an interactive tutorial created by the Canadian Partnership Against Cancer in collaboration with the Canadian Centre for Applied Research in Cancer Control and the Priorities in Cancer Control Network of the Canadian Institutes of Health Research. The new tutorial helps support public discussion and expert deliberations on how health-care funding recommendations are made and which drugs, programs, and treatments should receive public funding in Canada's healthcare system.
SourceCanadian Partnership Against Cancer
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Emergency Department Patient Experience of Care SurveyIn 2012, the Centers for Medicare & Medicaid Services (CMS) entered into a contract with RAND to develop an Emergency Department Patient Experience of Care (EDPEC) Survey. They designed and tested three survey instruments for use with adult patients who have visited the emergency department. In this report, we briefly summarize the work that we conducted,including survey development activities, field test procedures, and results of the data analysis.
They also present the three English-language survey instruments that resulted from the field test.
SourceRand Corporation
CategoryMonitor & Evaluate, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication Date2014
Engagement Planning TemplateThe Health Foundation’s Engagement Planning Template can be used as a first step to frame a particular question about improving patient engagement. It offers six steps to map out the foundations for a successful implementation plan:
• Who do you want to engage?
• Why do you need to engage them?
• How would you involve them?
• What would hinder them?
• What would support them?
• What would success look like?
SourceHealth Foundation
CategoryDesign, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateOctober 2013
Engagement Planning WorkbookThis workbook provides a step-by-step process for developing an engagement plan. The engagement planning process is split into three major stages: scope, act, and evaluate. Each stage has a subset of steps, tips, activities, and accompanying templates. Available templates include:
• A stakeholder collaboration and conflict matrix
• Stakeholder profile cards
• A strategic engagement plan
• An operational engagement plan
In addition to blank templates, the workbook provides examples of filled out templates, as well as numerous case studies illustrating the completed step-by-step process.
SourceDepartment of Sustainability and Environment, Government of Victoria
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryAustralia
Publication DateSeptember 2005
Engagement ToolkitThis Engagement Toolkit, designed for healthcare providers, can be adapted for use by different healthcare organizations in different healthcare settings. It provides knowledge of the different components and steps in the engagement process, tools for engagement, and promotes evaluation of engagement.
SourceHealth PEI
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateMarch 2016
Engaging Caregivers in Mental Health and Addiction Services in Canada: Promising Practices Guide The Promising Practices Guide by the Mental Health Commission of Canada highlights several promising practices and potential barriers to implementation for mental health and addiction services that are looking to strengthen or integrate meaningful engagement practices with family caregivers in policy, planning, and care delivery.
SourceMental Health Commission of Canada
CategoryDesign, Assess
Language AvailabilityBilingual
CountryCanada
Publication Date2019
Engaging Health Care Users: A Framework for Healthy Individuals and CommunitiesThis report introduces a continuum for engagement from information sharing to partnerships. It recommends entry points for user engagement occurring at four different levels of the health care system.
SourceAmerican Hospital Association (AHA)
CategoryDesign, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateJanuary 2013
Engaging Marginalized Communities: Honoring Voices and Empowering ChangeThis resource was developed from lessons learned as a result of programming that was designed by four different health municipalities to engage potentially marginalized populations in community-based planning. This resource identifies key principles, lessons learned, important elements in engagement including relationship-building and shared power, key steps and tips for planning on engagement.
SourceHC Link Ontario
CategoryMonitor & Evaluate
Language AvailabilityEnglish
CountryCanada
Engaging Patients in Communication at Transitions of CareCommissioned by the Australian Commission on Safety and Quality in Health Care, this report examines current evidence on the engagement of patients in communication at transitions of acute care and details effective tools, strategies, and resources to facilitate this engagement. The report found five key themes that enable engagement at transitions of care:
• Organisational commitment to patient engagement;
• Organisational culture and norms;
• Individual health care provider’s orientation and actions;
• Understanding and negotiating patient preferences; and
• Enacting information sharing and communication strategies.
The strategies and resources included in the report facilitate development and improvement in these areas.
SourceAustralian Commission on Safety and Quality in Health Care
CategoryDesign, Assess
Language AvailabilityEnglish
CountryAustralia
Publication DateFebruary 2015
Engaging Patients in Patient Safety – a Canadian GuideThis comprehensive resource, based on evidence and leading practice, helps patients and families, patient advisors, providers, and leaders work together more effectively to improve patient safety. It highlights the value patients offer in preventing patient safety incidents, responding when something goes wrong, and learning to build safer care. It provides comprehensive understanding of why and how to engage with patients and families for safer, quality care at the direct level of care, and at organization and system levels, and considerations of how to evaluate both processes and outcomes of engagement at these levels. To complement the guide, a collection of tools and resources are available throughout it.
SourceCanadian Patient Safety Institute (CPSI)
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateFebruary 2018
Engaging Patients in the Research Process: A toolkit for Project LeadsThis toolkit, developed for research project leads, provides recommendations for engaging with patient partners at the beginning of research projects. Engaging patient partners from the beginning of a research project allows for a more fulsome and collaborative representation of the patient voice in research. The toolkit describes steps to develop a patient engagement plan and outlines roles for patients in research.
SourceCan-SOLVE CKD Network: SPOR
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateDecember 2017
Engaging Queenslanders: A Guide to Community Engagement Methods and TechniquesThis guide is intended to inform public officials and practitioners seeking to establish effective community engagement practices. Produced by the Queensland Department of Communities as part of a suite of resources on effective community engagement across the public sector, it relies on the Organization for Economic Cooperation and Development’s three part engagement model, in which information, consultation, and active participation are seen on a continuous spectrum. The guide offers:
• A survey of techniques within each category
• A discussion of the strengths and weaknesses of each technique
• Information to help select the level and style of engagement most valuable for a particular project
• Guidelines for evaluation following the implementation of engagement techniques
SourceQueensland Government Department of Communities
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryAustralia
Publication DateN/A
Engaging Stakeholders: A Planning ToolThis tool provides a systematic approach to stakeholder analysis to inform planning decisions and engagement. The Stakeholder Engagement Tool is a two-part tool with guiding principles, case examples and an implementation checklist to support groups in analyzing their stakeholders as part of program planning.
It documents the following steps in stakeholder analysis:
• Identify stakeholders
• Define stakeholder roles and resources
• Identify dynamics among stakeholders
• Establish the optimal stakeholder group
• Create a stakeholder engagement plan
• Monitor stakeholder engagement
SourceUS Agency for International Development National Collaborating Centre for Methods and Tools MEASURE Evaluation
CategoryDesign, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateApril 2011
Engaging with Consumers: A guide for district health boardsThis resource provides information for healthcare professionals to improve consumer engagement in the design and delivery of services, and the development of policy and governance procedures. In addition, the successes and learnings from other providers about how they engage with consumers are included.
SourceHealth Quality and Safety Commission
CategoryDesign, Assess
Language AvailabilityEnglish
CountryNew Zealand
Publication DateJune 2015
Engaging with Patients and Caregivers about Patient Relations: A Guide for HospitalsThis how-to guide, intended for healthcare providers, includes strategies for leading an effective engagement process, key sections include:
- Why to engage with patients and families
- Getting ready to engage
- Ways to build your patient engagement team
- Questions to ask during the engagement
- Ways to engage
- Ensuring privacy
- Document and report
- Evolving your patient engagement process
Each step is clearly identified, so organizations with more experience engaging patient and family advisors can jump to the sections that are most relevant to them.
SourceHealth Quality Ontario (HQO)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateJune 2013
Engaging with Patients and Caregivers about Quality Improvement: A Guide for Healthcare ProvidersThis guide, co-written with patient advisors, connects key steps in the quality improvement process with recommended actions, tips and tools to optimize patient engagement, with a specific focus on Quality Improvement Plans. The guide intends to assist healthcare providers to engage with patients to design, implement, and communicate their quality improvement initiatives. Patients, families and caregivers can also use the guide as an orientation when joining an organization’s quality improvement efforts.
SourceHealth Quality Ontario (HQO)
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Ensuring Correct Surgery This brochure helps patients understand the expectation prior to surgery and assists patient and their families in developing a list of question to ask their doctor/nurse to better understand the surgery.
SourceDepartment of Veterans Affairs National Center for Patient Safety
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Essential Allies: Families as AdvisorsThis guide is intended for helping those providing services to infants and young children with special needs in working more effectively with family members at the program and policy level. The guide stresses the benefits and barriers to family participation in advisory activities and offers guidelines for promoting family participation. It also offers specific strategies for identifying families to serve in advisory capacities, approaches for supporting and maintaining their involvement, and ideas for expanding the networks of parents who provide input and guidance at the policy level. Included throughout are examples of family/provider collaboration that demonstrate the diversity of ways that families are influencing policy and practice in health and other human service organizations and institutions. The guide emphasizes approaches for involving families who, because of socioeconomic status, educational background, or language or cultural differences, have been under-represented in advisory roles. Appendices provide sample job descriptions, samples of materials for recruiting and selecting families for staff positions, and sample documents for developing family advisory boards.
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateDecember 1995
Ethical Guidelines for Engaging with Patients as Partners in Health Research This document serves to provide ethical guidance on aspects of patient engagement in health research. The guide outlines definitions relevant to ethics and includes ethical considerations for health researchers and patients to reflect on when considering strategies for meaningful and active engagement in health research.
SourceAlberta Strategy for Patient-Oriented Research (SPOR) Unit
CategoryAssess
Language AvailabilityEnglish
CountryCanada
Publication DateOctober 2020
Ethical Guidelines for Engaging with Patients as Partners in Health Research in AlbertaThis document provides guidance for researchers engaging patients in a variety of roles. The document defines key concepts and terms to facilitate understanding of patient engagement in health research and provides further examples of patient engagement in health research, engagement ethics, a research ethics overview, and discusses important considerations of power structures, and confidentiality.
SourceAlberta Innovates
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateAugust 2018
European Patient Ambassador ProgrammeThe European Patient Ambassador Programme (EPAP) is a training course for patients, family members, or carers who would like to be patient representatives but who may not how to get started, or may be looking for additional guidance. The programme has seven interactive modules:
• Becoming better informed
• Improving public awareness
• Improving treatment and care
• Supporting research and development
• Influencing policy
• Working with the media
• Participating in scientific and medical conferences
In addition to the program, EPAP has included a resource section designed for patient ambassadors and advisors.
This resource is free of charge; however, it requires you to create a login.
SourceEuropean Lung Foundation (ELF)
CategoryImplement
Language AvailabilityBilingual
CountryUnited Kingdom (UK)
Publication DateN/A
Evidence Scan: Measuring patient experienceThis evidence scan addresses the following questions:
How has the experience of patients and carers been measured in healthcare?
What are the pros and cons of different approaches for measuring improvement over time?
It provides an accessible overview of the range of methods that have been used to measure patient experience in order to help practitioners, planners, and researchers consider the best approaches for their own local improvement initiatives. However, the focus is on compiling broad themes from literature, not providing summaries of individual studies or tools.
SourceHealth Foundation
CategoryMonitor & Evaluate, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateJune 2013
Experience-Based Co-DesignThis toolkit provides insights to working with patients to improve health care through co-design mechanisms. It is outlined in a linear, step-by-step process, from evaluating if experience-based co-design is a fit for your organization through to reporting and evaluation. Each section is prefaced with a short explanatory video, and includes relevant template documents (such as observation consent forms, sample meeting agendas, and sample presentations). For additional examples of experience-based co-design in practice, the toolkit also includes four relevant case studies.
SourceKing's Fund
CategoryDesign
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateDecember 2013
Facilitation Primer: Strategies, Tools, and ConsiderationsThis primer is written to train individuals who will be facilitating stakeholder related meetings, but who are not professional facilitators. The skillset that it teaches is applicable to the facilitation of any meeting, be it between stakeholders, patient and family advisory councils, or general patient feedback. The guide outlines the “5 P’s” for meeting preparation and provides checklists of considerations for: the purpose, the participants, the process and possible dynamics, and planning for logistics. The planning section is followed by meeting facilitation tools, including guides to:
• Purpose statement(s)
• Agenda(s)
• Ground Rules
• Preparing a Meeting Summary
• Conducting a Meeting Evaluation
• Possible Meeting Alternatives
The primer closes with a guide to keeping meetings on track, offering specific situations and examples of effective responses to maintain an inclusive space and achieve the meeting goals.
SourceAgency for Healthcare Research and Quality (AHRQ)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateJanuary 2012
Family Presence (Visitation): Corporate Policy ManualThis resource features the Providence Health Care family presence (visitation) policy created for establishing guidelines and ensuring consistent practices of patient/resident directed family presence. The policy ensures the needs and perspectives of patients/residents, families and caregivers are being actively promoted and supported. Organizations that are looking to remove visiting hours and implement family presence policies and practices can use this as an example for engaging with patients and families in delivering safe and patient-centred care.
SourceProvidence Health Care
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateDecember 2013
Family Presence Conversations - Tips for Patient, family, advisor and citizen conversations with healthcare partnersCreated with patients and families across Canada, this resource assists in beginning the conversation about family presence with family members, caregivers and healthcare providers. The resource provides suggestions for engaging with healthcare providers in discussing family presence.
SourcePatients for Patient Safety Canada, Patients Canada, Imagine Citizens, Canadian Patient Safety Institute (CPSI), Canadian Foundation for Healthcare Improvement (CFHI)
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication Date2016
Family ToolkitThis Family Toolkit, consisting of 5 modules, assists families in caring for a family member with a mental illness. By being educated about the mental or substance use disorder, families are able to take an active role in the individual’s recovery. In addition, modules 1 and 2 talk about engaging healthcare providers in developing treatment plans and in strengthening the relationship between the caregiver and healthcare provider.
- Module 1: Understanding Mental and Substance Use Disorders
- Module 2: Supporting Recovery from a Mental or Substance Use Disorder
- Module 3: Communication and Problem-Solving Skills
- Module 4: Caring for Yourself and Other Family Members
- Module 5: Children and Youth in the School System
SourceHeretoHelp
CategoryDesign
Language AvailabilityEnglish
CountryCanada
Publication Date2004
Financial Compensation of Patients, Caregivers, and Patient/Caregiver Organizations Engaged in PCORI-Funded Research as Engaged Research Partners This guideline developed by PCORI emphasizes the important of research activities reflecting the time and contributions of all patient partners. Compensation of patient partners, caregivers and other voices is important in demonstrating the value of the time and effort required to participate in research, and ensures that these individuals are treated as valued contributors to the research project, and can help to facilitate and further engagement. This resource includes a sample matrix addressing the various levels of engagement and appropriate compensation.
SourcePCORI
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateJune 10, 2015
Five Questions to Ask about your MedicationsReducing the risk of fragmented care, adverse drug events, and medication errors during transitions of care requires consumers to be an active partner in their health and ensure they have the information they need to safely use their medications. This easy to read poster can be hung in any healthcare provider’s office as a visual aid engages patients to ask five questions about their medication.
SourceCanadian Patient Safety Institute (CPSI)
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Framework for Community Engagement and Local Health PlanningThis framework provides objectives, guiding principles, and general methods to use in planning community engagement processes, primarily designed to serve the Central East LHIN.
SourceCentral East Local Health Integration Network (LHIN)
CategoryAssess
Language AvailabilityEnglish
CountryCanada
Publication DateJune 2006
Frequently Asked Anesthesia QuestionsThis list of Frequently Asked Questions contains common questions patients, families and caregivers may have about anesthesia during surgery. These questions may help to prepare patients, families and caregivers for what they or their loved ones will experience during surgery, and any necessary information or materials for the anesthesiologist during preoperative assessments.
SourceCanadian Anesthesiologists' Society
CategoryAssess
Language AvailabilityBilingual
CountryCanada
Publication DateOctober 22, 2010
From consumer Story to Health Experience WheelThis step-by-step resource provides the tools and templates to create a concise summary of a storyteller’s experience, from their perspective. Patients are involved at each point in the process to ensure their Health Experience wheel reflects their experience and gives them control over the final product and the way their story is portrayed.
SourceConsumer Health Forum
CategoryDesign
Language AvailabilityEnglish
CountryAustralia
Publication DateOctober 2014
Getting Involved in Quality Improvement: A Guide for Health Care OrganizationsThis guide assists healthcare organizations determine the right time and methods to engage with patients and caregivers. Patient and caregiver engagement may be different depending on the organization’s goals for engagement.
SourceHealth Quality Ontario (HQO)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Getting Involved in Quality Improvement: A Guide for Patient and Caregiver AdvisorsThis guide provides patients, families and caregivers with how, why and when they can engage in a quality improvement (QI) project. Engaging in a QI project provides patients, families and caregivers with the opportunity to improve the patient experience of care, and overall healthcare outcomes.
SourceHealth Quality Ontario (HQO)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Getting Started in Video EthnographyKaiser Permanente’s Care Management Institute has developed a replicable method for using video ethnography to learn from patient and staff experiences by capturing interviews and observations on videotape, analyzing the footage to identify improvement opportunities, and highlighting them in short videos that reflect the heart of patient experiences. The methodology we describe can be tailored and adapted for specific quality improvement purposes.
This toolkit contains key information on the four main stages of video ethnography for quality improvement
• Preparing for field work: planning and study design
• Field work: interviewing, observing, and videotaping
• Analyzing data and identifying actionable opportunities: debriefing, coding, analyzing, and prioritizing findings
• Creating video and other deliverables: choosing illustrative clips, editing videos, creating additional materials, and translating learning into action
The toolkit is not intended as an exhaustive manual on how to use video to capture patient voices or to develop new products or services. Kaiser Permanente’s Care Management Institute focuses here on a single approach with which we have had success in rapid quality improvement among a number of teams.
SourceKaiser Permanente Care Management Institute (CMI)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUSA
Publication Date2010
Governing for QualityThis guide outlines seven essentials for healthcare boards to improve patient quality and safety:
- Lead and set clear goals
- Gather information and seek out patient stories
- Establish system-wide measures and monitor them
- Put a high quality and safety culture in place
- Ensure the right mix of people and encourage discussion
- Commit to ongoing learning at all levels
- Define roles and establish clear accountability at all levels
In addition, board members can assess their progress using a checklist that includes:
- Supporting a culture of care and compassion
- Promoting board responsibility for high quality and safety
- Communicating with and listening to patients and families
- Effective information and monitoring systems
- Maintenance of high professional standards and confidence
- Strengthening clinical governance and clinical leadership
SourceHealth Quality and Safety Commission
CategoryImplement, Assess
Language AvailabilityEnglish
CountryNew Zealand
Publication DateFebruary 2016
Guide for Developing a Community Based Patient Safety Advisory CouncilThis guide provides information on empowering individuals and organizations in developing community-based advisory councils. By providing a step-by-step approach, along with resources, this guide enables patients, consumers, and healthcare providers to drive change for patient safety through education, collaboration, and consumer engagement. This guide is intended for patient safety councils but it can be applied to other patient advisory councils.
SourceAurora Health Care, Agency for Healthcare Research and Quality (AHRQ)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateApril 2008
Guide for Developing National Patient Safety Policy and Strategic PlanThis resource, for policy makers and healthcare providers, provides a four-step approach in developing a patient safety policy and a strategic plan:
- Situation analysis
- National patient safety policy development
- National patient safety strategic plan development
- Monitoring and evaluation of the implementation of the patient safety policy
Although the overall message of the guide is improving patient safety, it does provide activities in selecting stakeholders, including patients and families, and fostering their participation in developing a national patient safety policy and strategic plan, which can be adapted to any patient engagement initiative. Engaging patients and families in the development of policies and strategic plans ensures their effectiveness at the point of care.
SourceWorld Health Organization (WHO)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryRepublic of Congo
Publication DateDecember 2014
Guide pratique – Stratégie de partenariat avec les patients et le public en recherche Available in French only.
This guide aims to:
- Assist in developing a partnership strategy with patients and the public;
- Provide the starting point for thinking about engagement goals for patients or members of the public in research projects;
- Help research teams, patients and members of the public find an appropriate structure for their partnership strategy regarding research projects with patients and the public;
- Steer research teams, patients and members of the public through the important steps of developing a partnership strategy with patients and the public;
- Allow research teams, patients and members of the public to access several external references, in addition to this guide, to assist them in their work
SourceUnité de Soutien SRAP/Québec
CategoryImplement, Design, Assess
Language AvailabilityFrench
CountryCanada
Publication DateJanuary 2018
Guide to Patient and Family Engagement in Hospital Quality and SafetyThis resource, developed with input from patients, family members, clinicians, hospital staff, and hospital leaders, encourages hospitals and patients and families to work together as partners in care to improve quality and safety. It does this using 4 strategies:
• Working with Patients and Families as Advisors
• Communicating to Improve Quality
• Nurse Bedside Shift Report
• IDEAL Discharge Planning
SourceAgency for Healthcare Research and Quality (AHRQ)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateJune 2013
Guidelines for Integrating Patient Stories Into Your MeetingsThis resource gives healthcare providers tips and strategies for recruiting patients and preparing them to tell their stories. Included in the resource is a worksheet to assist with planning a patient storytelling event.
SourceSouthern Health
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateMarch 2017
Handbook on Citizen Engagement: Beyond ConsultationThis handbook is intended to help individuals and organizations, especially in government, in developing strategies to engage citizens in setting priorities and in making decisions. It builds on CPRN experience to provide an overview of engagement practices and resources to help plan citizen engagement projects.
SourceCanadian Policy Research Networks (CPRN)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateMarch 2008
Health Canada Policy Toolkit for Public Involvement in Decision MakingThis toolkit, for policy makers and healthcare providers, provides principles, guidelines and information for effective involvement of citizens, including patients and families, in decision making regarding healthcare priorities, policies, and programs. Engaging the public, like patients and families, in the decision making results in stronger policies, programs and overall healthcare outcomes. Although this toolkit is meant for government decision making, the practical guidelines for planning, designing, implementing, and evaluating a range of public involvement techniques can be adapted to any healthcare organization. In addition, the toolkit includes cases studies using different techniques in increasing public involvement in decision making.
SourceHealth Canada
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityBilingual
CountryCanada
Publication Date2000
Health Equity Impact Assessment This tool can be used by healthcare professionals when designing engagement initiatives to ensure more equitable service delivery to potentially vulnerable or marginalized populations. Designed as a decision support tool, HEIA guides users thought the steps of identifying how their program, policy or engagement activity may impact diverse population groups in different ways. Ensuring engagement activities are designed with equity and access in mind will increase engagement and participation in projects.
SourceMinistère de la Santé et des Soins de longue durée, Ministry of Health and Long-Term Care
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityBilingual
CountryCanada
Health Literacy Universal Precautions ToolkitThe AHRQ Health Literacy Universal Precautions Toolkit, 2nd edition, can help primary care practices engage patients through reducing the complexity of health care, increasing patient understanding of health information, and enhancing support for patients of all health literacy levels.
This toolkit provides evidence-based guidance to adult and pediatric practices to ensure that systems are in place to promote better understanding by all patients. The toolkit is divided into manageable chunks so that it can be implemented piece by piece in a busy environment. It contains:
• 21 Tools (3-5 pages each) that address improving: spoken communication, written communication, self-management and empowerment, and supportive systems
• Appendices (over 25 resources such as sample forms, PowerPoint presentations, and worksheets)
• Quick Start Guide
• Companion Implementation Guide
SourceAgency for Healthcare Research and Quality (AHRQ)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateJanuary 2015
Health Planner's Toolkit: Community Engagement & CommunicationThis module is meant to acquaint its readers with the why and the how of community engagement. It provides definitions, theories and frameworks that lie behind community engagement, it provides examples of the manageable tensions within community engagement, and it describes basic community engagement tools. It also describes the ten steps in conducting a community engagement process.
SourceGovernment of Ontario
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication Date2006
Health Service Co-Design GuideThis resource introduces the concept of co-design and provides a toolkit to apply the principles of co-design to a new or existing patient engagement project, or to solve a specific issue in healthcare delivery. The toolkit offers many tools for a variety of patient engagement initiatives including:
• Planning Workshops
• Patient Shadowing
• Patient Journey Mapping
• Experience-Based Surveys
• Patient Stories
• Ideas Groups
• Stakeholder Needs Tables
• Scenarios and Personas
• Service touchpoints and hotspots
• Prototyping
Within each tool is an explanation for when, why and how to use the particular tool as well as templates and examples to guide you in its use. The toolkit also offers “route maps” to guide you through which tools to use, depending on the goal of your project. The maps place relevant tools in order for the creation of a new project, the improvement of an old project, or the process of solving a specific issue.
SourceWaitemata District Health Board
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryNew Zealand
Publication Date2010
Health Service Co-design: working with patients to improve healthcare services guide and toolkit This guide will help you work with patients to understand their experiences and make improvements to healthcare services. It provides a range of flexible tools for working effectively with patients in service improvement work. While the focus is on patients themselves, the tools can be equally applied to other groups such as frontline staff, family/whanau, and carers. Co-design provides you with the methods and tools not only to know how you are doing but to improve your services in such a way that really meets the needs of patients, because they have contributed to the design. This guide will be useful for any operational, clinical or quality staff who want to involve patients in improving healthcare services.
SourceWaitemata District Health Board
CategoryDesign
Language AvailabilityEnglish
CountryNew Zealand
Publication DateOctober 2010
Healthcare Quality ImprovementTo facilitate quality improvement initiatives in Ontario, Health Quality Ontario (HQO) has developed a comprehensive Quality Improvement Framework that brings together the strengths of several QI science models and methodologies, such as the Model for Improvement from the Institute for Healthcare Improvement (IHI), and traditional manufacturing quality improvement methods like Lean and Six Sigma. HQO grounded their framework in Deming’s System of Profound Knowledge to ensure a system-wide view of improvement would be applied to any quality improvement initiative, in any healthcare sector. Resources on Experienced Based Design are included.
SourceHealth Quality Ontario (HQO)
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Hospital Harm Improvement ResourceThe Canadian Institute for Health Information (CIHI) and the Canadian Patient Safety Institute (CPSI) have collaborated on a body of work to address gaps in measuring harm and to support patient safety improvement efforts in Canadian hospitals. The Hospital Harm Improvement Resource was developed by CPSI to complement the Hospital Harm measure developed by CIHI. It links measurement and improvement by providing evidence-informed practices that will support patient safety improvement efforts. The Hospital Harm Improvement Resource is a compilation of evidence informed practices linked to each of the clinical groups within the Hospital Harm measure to help drive changes that will make care safer. Developed by CPSI through extensive research and consultation with clinicians, experts and leaders in quality improvement (QI) and patient safety, the Improvement Resource is intended to make information on improving patient safety easily available, so teams spend less time researching and more time optimizing patient care.
For each clinical group, the Improvement Resource provides the following:
- An overview of the clinical group and goal for improvement
- Implications for patients experiencing the type of harm and their importance to patients and family Evidence informed practices to reduce the likelihood of harm
- Outcome and process improvement measures
- Associated Accreditation Canada standards and Required Organizational Practices Global Patient Safety Alerts recommended search terms
- Success stories from organizations
- References and key resources, including guidelines and select research articles
SourceCanadian Patient Safety Institute (CPSI), Canadian Institute for Health Information (CIHI)
CategoryMonitor & Evaluate
Language AvailabilityBilingual
CountryCanada
Publication DateJune 2016
How can we make the partnership with patients/families more impactful?This resource summarizes key points from a webinar on lessons learned from an independent evaluation of Patients for Patient Safety Canada (PFPSC). Included in the key points are a list of tips for both providers and patients/families in building a relationship between the two parties. A strong partnership allows for the needs of providers and patients/families to be heard and implemented in a patient safety and engagement initiative.
SourceCanadian Patient Safety Institute (CPSI)
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateJuly 2015
How Person and Family Engagement Can Help Hospitals Achieve Equity in Health Care Quality and Safety: A Supplemental Resource for Hospital Improvement Innovation Networks The Health Equity Roadmap provides hospitals and improvement teams direction on how to apply six overarching patient and family engagement strategies to help to achieve health equity and address barriers to equity and engagement. Each strategy has examples and patient and family engagement practices to help institutions operationalize the strategies. The roadmap includes: an overview of key concepts and discusses health equity and patient and family engagement practices across measurement and research; organizational partnerships; care, policy, and process redesign; patient and family preparation; and transparency and accountability.
SourceAmerican Institutes for Research (AIR)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateMarch 2017
How to communicate effectively on an advisory panelConsumers United for Evidence-Based Healthcare has created a video about communication strategies on an advisory panel, based on a Twitter Chat co-hosted with Dr. John Santa of OpenNotes. This video provides strategies based on real experiences from patients participating on advisory panels, including how to ensure the consumer view is being heard and how to introduce conflict tactfully. The overarching themes discussed in the video include opposing a viewpoint, collaboration, and how to combine opposing a viewpoint and collaboration.
SourceConsumers United for Evidence Based Healthcare
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateJanuary 17, 2018
How to Create a Pill CardThis step by step guide assists patients and their families in keeping track of their medicines. The customizable template, along with instructions, provides patients an easy to use reminder of the amount and time medication should be taken.
SourceAgency for Healthcare Research and Quality (AHRQ)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateDecember 2014
How to Engage Patient and Public Advisors: A Guide for StaffThis guide provides information on patient and community engagement in healthcare with a focus on the utilization of patient and public advisors as an engagement strategy. Included in this guide is an 8-step process for engaging advisors:
- Step 1: Determine if Engaging Advisors is the Best Approach
- Step 2: Determine Readiness to Engage with Advisors
- Step 3: Determine the Advisor’s role
- Step 4: Plan Meeting Logistics
- Step 5: Recruit and Select Advisors
- Step 6: Begin Working with Advisors
- Step 7: Sustaining Advisor Engagement
- Step 8: Conclude the Advisor’s Term
SourceVancouver Coastal Health
CategoryDesign
Language AvailabilityEnglish
CountryCanada
How to Help Prevent Healthcare-Associated Infections: A Patient and Family GuideThis booklet offers patients and their families information about how to assist in stopping the spread of healthcare-associated infections using good hand hygiene. Included in the booklet is a checklist for preventing the spread of infections and a list of the four moments healthcare providers need to clean their hands. Patients and their families take an active role in preventing the spread of infections, resulting better and safer outcomes.
SourceCanadian Patient Safety Institute (CPSI)
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
How to Introduce YourselfTip sheet to support patient partners in introducing themselves when speaking to groups of people. This resource may be helpful for new advisors and partners, or those who are working in a new setting.
SourcePatient Voices Network
CategoryAssess
Language AvailabilityEnglish
CountryCanada
How to Involve People Who Use DrugsThis resource was co-designed with peers and is meant to facilitate the meaningful engagement of people with lived experience using drugs in order design programs, policies, and other health services. The guide highlights how to create a supportive environment, details important knowledge for compensation, and emphasizes the do’s and don’ts of engaging people who use drugs. The guide is also applicable when considering engaging other groups of people with lived experience.
SourceBC Centre for Disease Control
CategoryDesign
Language AvailabilityEnglish
CountryCanada
Publication DateDecember 2017
How to successfully engage patients and families in building quality-improvement initiatives - 10 lessons learned from Patient and Family AdvisorsThis resource includes insights from Patient and Family Advisors into what works best for them to partner in meaningful ways. These insights were derived from patient and family advisor participation CFHI quality improvement collaboratives. They provide actionable opportunities for healthcare providers and leaders on how to engage patients and co-design improvement projects based on what works for patients and family advisors.
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryImplement, Design, Assess
Language AvailabilityBilingual
CountryCanada
Publication Date2018
How-to Guide: Deploy Rapid Response TeamsA Rapid Response Team (RRT) is a team of clinicians who bring critical care expertise to the patient bedside (or wherever it is needed). This how-to guide, for healthcare providers and policy makers, provides the steps and tools necessary in developing, implementing, and spreading a RRT. Engagement of patients and family members occurs during the education of RRT upon admission of the patient which may include posters or brochures describing the purpose of the team, as well as the mechanism for activation.
This resource is free of charge; however, it requires you to create a login.
SourceInstitute for Healthcare Improvement (IHI)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUSA
Publication Date2008
I Wish I Had Asked ThatI Wish I Had Asked That is a worksheet and decision aid designed to be provided to patients to empower the patient in the healthcare setting and facilitate shared decision making. It is intended to be used during an appointment with a healthcare practitioner as a visual aid to the engagement process. The worksheet asks the patient to write down the issue they are facing, provides space for each of the options discussed with the healthcare practitioner, and suggests questions for the patient to ask or consider when reflecting on their options.
SourceInformed Medical Decisions Foundation
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateDecember 2012
Improvement 101 Learning Series The Improvement 101 Learning Series consists of three learning modules for patients, families and caregivers that are designed to provide an understanding of the language, methods, processes, tools and techniques that are commonly used by health care teams during improvement projects. These modules help to facilitate patient, family and caregiver understanding of quality improvement and facilitate further engagement in system improvement initiatives.
SourceBC Patient Safety & Quality Council (BCPSQC)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateApril 25, 2018
Improvement Leaders' Guide – Involving Patients and Carers: General Improvement SkillsThis guide is designed primarily for health professionals responsible for improvement, wishing to involve patients and carers in the process of improvement, but are unsure of where to begin. It provides a framework for patient involvement in the improvement of care, as well as an outline to organizational implications that need to be considered.
SourceNHS Modernisation Agency
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateAugust 2005
Improvement Leaders' Guide – Measurement for Improvement: Process and Systems ThinkingThis tool covers all the necessary steps in measuring for improvement. It provides an introduction to different types of measurement, a guide to aid you in choosing measures to analyze during your initiative, information on data presentation, and a comprehensive case study to provide examples. The toolkit provides pertinent information and a useful skillset to aid in the measurement of any improvement initiative. Although the toolkit is not specific to patient engagement initiatives in particular, it approaches measurement through a lens of engagement through advising users to connect their measures for improvement with other initiatives in the health community, to include all stakeholders, and to define the specific group of patients being focused on.
SourceNHS Modernisation Agency
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication Date2005
Improvement Leaders’ Guide – Process Mapping, Analysis and RedesignThis Improvement Leader’s Guide introduces process mapping as a patient engagement component of the PDSA Model for Improvement. Originally developed by the NHS Institute for Innovation and Improvement as part of the “Improvement Leaders’ Guides” series, the guide is now hosted on the NHS Improving Quality website. The guide provides how-to directions on organizing an event to map the patient journey, mapping the healthcare process, and analyzing the patient’s journey once the map is complete. Finally, the guide offers advice on redesigning the patient’s journey around the patient to reveal the best areas for new patient-centred improvement initiatives.
SourceNHS Modernisation Agency, NHS Institute for Innovation and Improvement (NHS Institute)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication Date2005
Integrated Primary and Community Care Patient and Public Engagement FrameworkUse this framework as guidance to engaging both patients and their families and the broader public in individual care, program and service design, and policy development and strategic planning.
SourceGovernment of British Columbia
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateApril 2011
Interactive Care ModelThis resource provides a framework that invites people to participate in their own care and strengthens the clinician-person partnerships while improving care quality, safety and outcomes.
This resource is free of charge; however, it requires you to create a login.
SourceGetWellNetwork
CategoryDesign
Language AvailabilityEnglish
CountryUSA
Publication DateOctober 2015
Involving Community and Stakeholders in Decision-MakingThis guide serves as a framework for thinking about the most effective and appropriate ways to design and conduct community participation programs that meet real community needs. It offers information and guidance on the entire process of collaborative community participation – from the initial consideration of a program, through the preparation of a community participation plan, to the implementation and trouble shooting of that plan, and, finally, the evaluation of the whole program. In addition to the information provided in each section, the appendices include a table outlining community engagement tools and their possible advantages and disadvantages, as well as tabulated evaluation criteria and guidelines for participation exercises.
SourceState Government of Victoria, Department of the Premier and Cabinet (DPC)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryAustralia
Publication Date2006
ISHAPED Patient-Centered Approach to Nurse Shift Change Bedside ReportThe ISHAPED (I=Introduce, S=Story, H=History, A=Assessment, P=Plan, E=Error Prevention, and D=Dialogue) project provides organizations with resources in engaging patients during bedside shift changes. This toolkit includes an implementation presentation in making transitions more patient-centered and a handoff report form for nurses for facilitating the engagement with the patient or family members.
This resource is free of charge; however, it requires you to create a login.
SourceInstitute for Healthcare Improvement (IHI)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
It’s Safe to Ask Campaign and ToolkitIt’s Safe to Ask is a campaign designed to help patients engage with doctors and nurses through asking three key questions:
1 – What is my health problem?
2 – What do I need to do?
3 – Why do I need to do this?
The campaign has developed a brochure and seven posters available in 15 different languages to be used in hospitals or healthcare centers.
The campaign also includes a toolkit for patients to help them navigate the healthcare system. The toolkit includes information on patient rights, communication tips, and information on engaging in patient safety.
SourceManitoba Institute for Patient Safety (MIPS)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
It's Okay to Ask: Tips for Talking to Your Health Care TeamThis resource provides suggestions and tips for patients on how to talk with their health care team about their health and health care. There are tips and question suggestions to help create a sense of comfort for patients with their provider, get the most out of their appointment, empower patients to ask questions about their treatment plans and provides a list of potential questions to ask providers if the patient requires further information. There are also suggestions for following up after a visit, as well as medication lists and symptom trackers.
SourceHealth Quality Council of Alberta (HQCA)
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateJanuary 2009
Language matters... 4 guidelines to using non-stigmatizing languageThis guideline outlines the importance of non-stigmatizing language when engaging with peers and people with lived experience. Non-stigmatizing language creates an inclusive and accessible environment for peers, which can lead to meaningful and respectful engagement during health service design and delivery.
SourceBC Centre for Disease Control
CategoryDesign
Language AvailabilityEnglish
CountryCanada
Publication DateDecember 6, 2017
Leadership Guide to Patient SafetyThis paper shares the experience of senior leaders who have decided to address patient safety and quality as a strategic imperative within their organization. It presents eight steps, supplemented with tools, for achieving patient safety in an organization:
- Step One: Address Strategic Priorities, Culture, and Infrastructure
- Step Two: Engage Key Stakeholders (including patients and families)
- Step Three: Communicate and Build Awareness
- Step Four: Establish, Oversee, and Communicate System-Level Aims
- Step Five: Track/Measure Performance Over Time, Strengthen Analysis
- Step Six: Support Staff and Patients/Families Impacted by Medical Errors
- Step Seven: Align System-Wide Activities and Incentives
- Step Eight: Redesign Systems and Improve Reliability
In step 2, the paper discusses the importance of effective communication and demonstrated understanding between patient and caregiver; failure to establish both contributes to medical errors. By focusing on creating systems that support both quality and safety, healthcare providers can transform the healthcare system and improve the lives of the patients and communities they serve.
This resource is free of charge; however, it requires you to create a login.
SourceInstitute for Healthcare Improvement (IHI)
CategoryMonitor & Evaluate, Design
Language AvailabilityEnglish
CountryUSA
Publication Date2006
Learning to Use Patient StoriesThis guide is based around the collection and use of patient stories, drawing upon the experience of 1000 Lives Plus. The methodology can be applied to the collection of effective stories from all members of society – patients, carers, guardians and members of staff. Everyone has a different, equally valuable perception of their healthcare experience.
Source1000 Lives Plus
CategoryImplement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateApril 2010
Living well through activity in care homes: the toolkitWhether you have 5 mins or a full hour, this toolkit provides home care staff activities and resources to engage with residents. With multiple examples, this toolkit allows the staff to provide a service focused on the residents’ needs, preferences and activity choices.
SourceCollege of Occupational Therapists Limited
CategoryImplement
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateMay 2013
Making Patient Engagement a Way of LifeOne of six briefs outlining themes discovered by teams funded to conduct patient engagement projects.
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryDesign, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Making the ChangeThis report explores behavioural science theories that suggest new ways of motivating people to take a more active role in their own health. It identifies five key enabling factors that have been shown to influence engagement and self-management behaviours, and suggests how they can be targeted in order to increase such behaviours:
• Growth mindset, self-efficacy and “grit”
• Removing friction costs (i.e. removing increases in effort required to perform a behaviour)
• Social connections
• Intrinsic motivation
• Goal setting and feedback
Using these factors, the report provides a framework for understanding the drivers plus examples and case studies to illustrate how the theories work in practice.
SourceHealth Foundation
CategoryAssess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateMarch 2016
Meaningful Recruitment of Patient and Family AdvisorsOne of six briefs outlining themes discovered by teams funded to conduct patient engagement projects (PEP).
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryDesign
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Medicines adherence: involving patients in decisions about prescribed medicines and supporting adherenceThis resource guides healthcare professionals in effectively involving patients in decisions regarding prescribed medications. It outlines four key components for medicine adherence
• Patient involvement in decisions about medicines
• Supporting adherence
• Reviewing medicines
• Communication between healthcare professionals
In addition, the guide includes tools and resources to help put the guidance into practice.
SourceNational Institute for Health and Care Excellence (NICE)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateJanuary 2009
My Medicine ListThis resource provides patients and their families with a template to keep track of their medication details including the name, description, amount, how to take it, when to stop, and why you’re taking it. The template aims to improve safer patient care.
SourceNational Transitions of Care Coalition (NTOCC)
CategoryImplement
Language AvailabilityBilingual
CountryUSA
Publication DateN/A
My Voice: A Workbook and Personal Directive for Advance Care PlanningMy Voice is a workbook and personal directive for advance care planning that can be used by patients, caregivers and families. This workbook provides information about some of the important aspects of advance care planning to be considered, and can serve as a guide and personal directive to help caregivers, family and healthcare professionals understand patient’s wishes about their care.
SourceCalgary Health Region
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Myth: High Patient Satisfaction Means High Quality CareTwo page article that summarizes the best available evidence to challenge widely held beliefs about issues in Canadian healthcare.
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryDesign
Language AvailabilityBilingual
CountryCanada
Publication DateOctober 2012
Next Steps in CareNext Steps in Care is a program of the United Hospital Fund in the US, which provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients. Next Step in Care materials emphasize careful planning, clear communication, and ongoing care coordination.
SourceNext Steps in Care
Category2015
Language AvailabilityEnglish
CountryUSA
Publication Date2015
Nursing Always Practices: Evaluation for Nursing Staff and Patients and FamiliesCo-designed with patients and families, this evaluation tool allows for both healthcare providers and patients and families to give feedback regarding a Nursing Always Practice. The tool assists organizations with tracking the improvement of patient- and family-centred care during the bedside shift change report.
This tool was developed by Bruyère Continuing Care in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative.
SourceBruyère Continuing Care
CategoryMonitor & Evaluate
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Observation Evaluation of Nursing Always PracticesThe Observation Evaluation of Nursing Always Practices is a patient engagement tool used to evaluate patient- and family-centred care practices including bedside shift change, use of care boards, hourly rounding and priority huddles. Co-designed with patients and families, this observational tool, for healthcare providers, evaluates the different aspects of “Always Practices” in the unit. The tool assists providers with tracking the improvement of engaging with patients and families in each implementation.
This tool was developed by Bruyère Continuing Care in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative.
SourceBruyère Continuing Care
CategoryMonitor & Evaluate, Implement
Language AvailabilityEnglish
CountryCanada
Publication Date N/A
Organizational Culture of Quality Self-Assessment Tool for Local Health Departments (LHDs)The Self-Assessment Tool (SAT) enables LHDs to measure organizational maturity within critical aspects or elements of a culture of quality and identify next steps for transformational change. This tool benefits beginner, intermediate, and advanced LHDs by providing a baseline assessment of QI maturity, revealing opportunities for improvement, and informing a trajectory for next steps to reaching a culture of quality.
The SAT has three main components:
1) Diagnostic Statements to assess the current organizational culture of quality and identify priority gaps.
2) Corresponding Transition Strategies that provide suggested actions to close priority gaps.
3) Scoring Summary to document results.
The SAT is based on NACCHO’s Roadmap to a Culture of Quality (The Roadmap). The Roadmap provides high level guidance on progressing through six phases toward a quality culture, presenting common organizational characteristics and strategies for transitioning to the next phase. Each phase is built around six foundational elements critical to building a culture of quality. The SAT is also organized by these six foundational elements and then further sub-divided into 20 sub-elements. These foundational elements and sub-elements address all the people, systems and structures — throughout all areas of an organization— that are foundational to developing a culture that values, models, and promotes continuous quality improvement.
SourceNational Association of County & City Health Officials (NACCHO)
CategoryDesign, Assess
Language AvailabilityEnglish
CountryUSA
Publication Date2013
Parent Partners: Creative Forces on Medical Home Improvement TeamsDeveloped by a Parent Partner, in collaboration with the Center for Medical Home Improvement (CMHI), this guide defines and describes to role of the Parent Partner on an improvement team and provides suggestions for encouragement and collaboration within the team. It outlines the steps from choosing a parent partner to engaging a parent partner on an improvement team. Together, healthcare providers and parent partners can generate ideas for quality improvement, test them in practice, and ultimately redesign how care is provided using partnerships with families. Although the guide’s focus is on medical homes, it can be adapted for any healthcare setting.
SourceCenter for Medical Home Improvement (CMHI)
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication Date2003
Parents as Partners Tip SheetsCreated by parents, the Parents as Partners tip sheets provide parents and caregivers with tips in partnering and working with a healthcare team. The sheets are separated into four strategies:
- Building a Relationship with your Healthcare Team
- Building a Partnership – Sharing Information
- Working Together – Making Decisions
- When we Disagree – Developing a Shared Understanding
SourceAlberta Health Services (AHS), Alberta Children's Hospital
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Parents Assisting, Inspiring, and Reassuring (PAIR) Mentor ProgramThe PAIR (Parents Assisting, Inspiring, and Reassuring) Mentor campaign connects parents of children with cancer with other parents, who serve as mentors. Parent mentors provide peer support and encouragement to parents new to the process. Some topics may include coping, decision making, parenting a chronically ill child, and partnering with staff. This toolkit includes the documents needed in recruiting and implementing PAIR Mentors in the organization.
This resource is free of charge; however, it requires you to create a login.
SourcePicker Institute, Institute for Healthcare Improvement (IHI)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Participation et consultation des citoyennes et citoyens en matière de santé et de bien-être Available in French Only
This document promotes and supports high-quality, deliberative activities that foster the public’s participation. Moreover, the document outlines the fundamental principles on which these activities are based.
SourceCommissaire à la santé et au bien-être Québec (CSBE)
CategoryMonitor & Evaluate, Design
Language AvailabilityFrench
CountryCanada
Publication DateAugust 2004
Participation ToolkitThis extensive toolkit provides comprehensive information and tools for integrating participation into public healthcare. It is split into three main sections:
• Participation Tools: pros and cons, tips for implementation, step-by-step guides, and additional resources on 30+ participation activities.
• An Evaluation Toolkit: a step-by-step guide to evaluation with information on developing a framework, collecting and analyzing data, and reporting, sharing and responding to results; a discussion of various evaluation methods; and a set of evaluation tools, including a question bank and various event templates.
• An e-Participation toolkit: guidelines to various social media engagement methods including sections on challenges, general considerations, tips for getting started, pros and cons, and case studies.
SourceScottish Health Council
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateFebruary 2014
Partnering in Self-Management Support: A Toolkit for CliniciansThe concepts and tools in this toolkit provide a set of activities and changes in supporting patients and families in the day-to-day management of chronic conditions. The toolkit includes tools for organizations beginning to design self-management support as well as, experienced organizations looking to improve their current self-management support practice. It also highlights the importance of collaborative care not just during a patient’s visit but before and after as well.
This resource is free of charge; however, it requires you to create a login.
SourceInstitute for Healthcare Improvement (IHI)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication Date2009
Partnering to HealThis tool is a video-based computer simulated training program to prevent infectious diseases in a hospital setting. The program highlights effective communication and the practices and ideas to create a “culture of safety.” It allows various actors within the care setting, including patients and family members, to select one of the following characters and make decisions about preventing disease and enhanced safety.
• A Physician
• A Registered Nurse
• An Infection Perfectionist
• A Patient Family Member
• A third-year medical student
SourceOffice of Disease Prevention and Health Promotion
CategoryAssess
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Partnering to Improve Quality and Safety: A Framework for Working with Patient and Family AdvisorsThis guide presents a framework for one powerful way to engage patients – as advisors on quality and patient safety initiatives. The Symposium for Leaders in Healthcare Quality developed this guide to help hospitals and care systems build and sustain partnerships with patient and family advisors, specifically to improve quality and safety. Health care leaders have an opportunity to use the insights and expertise of patient and family advisors to accelerate the pace of transformation in pursuit of the Triple Aim—better care, better health and lower cost. This guide presents how-to steps to get started.
This resource is free of charge; however, it requires you to create a login.
SourceAmerican Hospital Association (AHA)
CategoryDesign, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateMarch 2015
Partnering with Patients and Families to Enhance Safety and Quality: A Mini ToolkitThis toolkit provides resources and tools to aid healthcare leaders, clinicians, and staff partner with patients and families to enhance quality and safety. Included in this mini toolkit are the following:
• Patients and Families as Advisors in Enhancing Safety and Quality: Broadening Our Vision
• Patient and Family Advisors Sample Application Form
• Patient Safety Champions: Their Roles in Developing and Supporting Partnerships with Patients and Families
• Tips for Group Leaders and Facilitators on Involving Patients and Families on Committees and Task Forces
• Applying Patient- and Family-Centered Concepts to Rapid Response Teams
• Selected Resources for Partnering with Patients and Families in Patient Safety
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateFebruary 2013
Path to Home PassportCo-designed with patients, families and caregivers, the Path to Home passport facilitates the partnership between healthcare providers and patients, families and caregivers in developing an individualized and holistic discharge plan. The passport assists in reducing readmission and improving healthcare outcomes. Included in the passport is important information for both healthcare providers and patients, families and caregivers:
- All About Me
- Things that are Important to Me
- My Hospital Care Team and Their Roles
- My Medication
- My Daily Activities
- My List of Medical Supplies and Equipment
- My Safe Return Home
- My Follow-up Appointments and Tasks
- My Community Care Access Centre (CCAC) Plan for Home
This tool was developed by Bruyère Continuing Care in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative.
SourceBruyère Continuing Care
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Path to Home Passport MagnetCo-designed with patients, families and caregivers, the Path to Home passport facilitates the partnership between healthcare providers and patients, families and caregivers in developing an individualized and holistic discharge plan. This magnet, for both healthcare providers and patients, families and caregivers, is a quick reference for important information regarding the patient’s discharge plan. Included are important phone numbers and details on follow-up appointments.
This tool was developed by Bruyère Continuing Care in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative.
SourceBruyère Continuing Care
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Patient & Family Healthcare Leadership: A Resource CompendiumCreated with input from patient and family council leaders, this resource is a summary of evidence and information about the impact of patient and family engagement on healthcare outcomes and care improvement. Included in this resource are “real-world” examples of current initiatives along with toolkits, frameworks, and primers related to the following topics:
• Patient and family advisor councils
• Quality, safety and value improvement
• Patient- and family-relevant measures
• Patient engagement and empowerment
• Patient portals
• C-suite engagement
• Frontline staff engagement
• Building design
This continuously updated living resource encourages suggestions for inclusion from patient and family council leaders to create a network of continuous learning in the healthcare system. This has led to a sampling of patient and family councils and their role within their organization.
SourcePatient and Family Health Care Leadership Network
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateJuly 2015
Patient & Public Advisors HandbookThis handbook describes the importance of involving patients and the public as committee members on organizational initiatives. It provides current and prospective patient advisors with expected roles within a committee and ways to prepare and succeed in the role. Tools for recruiting patients and the public for advisory committees are also included in the handbook. Real-life examples of advisory committee work from Vancouver Coastal Health are also included for organizations and healthcare providers looking to undertake similar projects.
SourceVancouver Coastal Health
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Patient and Coach Information: Total Hip Replacement and Total Knee Replacement The Saskatchewan Surgical Initiative developed two information booklets on total hip and knee replacement for patients and their coaches. The booklets provide information on preparing for surgery, what to expect after surgery, and emphasizes ways for patients and coaches to take an active role in their care.
SourceSaskatchewan Surgical Initiative
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Patient and Family Advisor (PFA) HandbookCo-designed with patient and family advisors, this handbook provides prospective and current patient and family advisors (PFA) with the responsibilities and expectations of a PFA. By becoming a PFA, patients and families are given the opportunity in designing and planning the care and services provided by the organization and the healthcare provider.
This handbook was developed by Saskatchewan Health Quality Council (HQC) in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative
SourceSaskatchewan Health Quality Council (HQC)
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Patient and Family Advisory Committee Introduction PackageCreating a patient and family advisory committee assists in enhancing and improving the patient and family care experience by having patients and families to engage with healthcare providers in the planning, delivery and evaluation of healthcare. Co-designed with patients and families, this resource provides organizations with the tools for creating and recruiting patient and family advisors (PFA) for a patient and family advisory committee (PFAC). It also provides current and prospective PFAs with an understanding of their expected roles and responsibilities. Other tools included in the package are:
- Terms of Reference
- Role Description
- Questions and Answers
- Telephone Screen
- Nomination Letter Template
- Interview Guide
- Acceptance Letter Template
- Non acceptance Letter Template
- Orientation Checklist
- Evaluation
This tool was developed by Bruyère Continuing Care in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative.
SourceBruyère Continuing Care
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateSeptember 2015
Patient and Family Advisory Council Getting Started ToolkitThis toolkit, for healthcare providers, includes a step by step guide in designing and implementing a patient and family advisory council. At each step – pre-planning, planning, initiating and sustaining – are the tools needed to successfully complete it.
SourceBJC HealthCare
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Patient and Family Advisory Councils: A Hospital Toolkit to Engage PatientsThis guide provides a step-by-step approach for planning, designing and implementing a patient and family advisory council (PFAC). There are tools for supporting organizations at each of the following steps so organizations at different levels of implementation are able to use the guide:
- Step 1: Establish a Sense of Urgency: Is My Hospital Ready to Engage in PFAC?
- Step 2: Create a PFAC Launch Team
- Step 3: Develop a PFAC Strategy
- Step 4: Prepare Hospital Leadership, Clinicians and Staff to Work with Advisors
- Step 5: Recruit Patients
- Step 6: Implement and Coordinate Advisor Activities
- Step 7: Share your Story: Keeping Engagement Alive
- Step 8: How to Utilize PFAC: Incorporating Culture Changes
Although focused on patient and family advisory councils, the tools within the guide can also be applied to patient safety advisory councils.
SourceColorado Hospital Association (CHA)
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateDecember 2014
Patient and Family Centred Care Resource KitUsing the four core concepts of patient and family centred care adapted from the Institute of Patient and Family Centred Care (IPFCC), this kit provides tools to enhance the effectiveness of individuals, teams and leaders in improving patient experience and quality outcomes. Using three themes – Practice and Self Efficacy, Process and Consistency, and Modeling and Dialogue, the toolkit provides examples about actively listening, communicating compassionately and using inclusive language when engaging with patients and families.
SourceAlberta Health Services (AHS)
CategoryAssess
Language AvailabilityEnglish
CountryCanada
Publication Date2014
Patient and Family Engagement Framework The British Columbia Mental Health and Substance Use Services (BCMHSUS) Patient and Family Engagement Framework is a practical decision tool designed to assist health care staff, physicians and researchers in the process of engagement with patients and families. Based on decades of evidence and international best practices, the framework outlines:
- How patient and family engagement is defined at BCMHSUS, and the importance of meaningful engagement
- The Spectrum of Engagement
- Practical steps for meaningful engagement
- Additional resources, tools and supports to utilize when engaging with patients and families
SourceBritish Columbia Mental Health and Substance Use Services (BCMHSUS)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryCanada
Patient and Family Engagement in Primary Care: Building Effective Patient and Family Advisory Councils in Three Ontario CommunitiesIn this report, the Change Foundation conducted interviews with three Family Health Teams that work closely with patient and family/caregiver advisors. The information gathered has been compiled into three case studies, each featuring the key lessons learned from each team. The purpose of this report is to assist other primary care organizations in their path to meaningful engagement through the experiences and ideas shared by each team.
SourceChange Foundation
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Patient and Family Led Feedback ForumsThis resource provides a step by step process for healthcare providers in creating and facilitating patient and family led feedback forum(s). The forum engages patients and families with healthcare providers in discussing the patient’s experience during their hospital visit. Quality improvement initiatives can arise from the forum, resulting in improving the overall patient experience within the organization.
SourceKingston General Hospital (KGH)
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Patient- and Family-Centered Care Organizational Self-Assessment ToolThis self-assessment tool, to be completed by a team of individuals across the organization, including caregivers, and patient and family advisors, assesses current patient- and family-centered care practices, and provides a basis for conversations about patient-centeredness in the organization.
This resource is free of charge; however, it requires you to create a login.
SourceNational Initiative of Children’s Healthcare Quality (NICHQ), Institute for Patient- and Family-Centered Care (IPFCC), Institute for Healthcare Improvement (IHI)
CategoryAssess
Language AvailabilityEnglish
CountryUSA
Publication DateJune 2013
Patient and Family-Centered Care Resources and ToolsThis document provides resources and tools for healthcare organizations and providers at primary care and primary health care settings to use to begin their journey toward patient and family-centered care.
SourceSaskatchewan Ministry of Health
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Patient- and Family-Centered Care: A Hospital Self-Assessment InventoryThis tool is designed to help hospital and health system leaders, trustees, medical staff, and employees think about how a hospital, department, or clinical area operationalizes patient and family centered care. It will assist those who complete it determine priorities for change and improvement. The assessment inventory is made up of 10 sections:
• Leadership
• Mission and Definition of Quality
• Charting and Documentation
• Patients and Families as Advisors
• Patient and Family Support
• Patterns of Care
• Quality Improvement
• Information/Education for Patients and Families
• Personnel
• Environment and Design
Each section asks specific questions pertaining to the level of patient and family centered care already established. It requires a rank based on its current status as well as its priority for improvement. Many who have used this inventory have found that even the process of completing the tool has educational value, because it helps inform participants about the core concepts and strategies of patient and family centered care.
SourceAmerican Hospital Association (AHA)
CategoryAssess
Language AvailabilityEnglish
CountryUSA
Publication DateSeptember 2004
Patient- and Family-Centred CareThis resource describes patient- and family-centred care at KGH and its core principles – dignity and respect, information sharing, participation and collaboration. It outlines how behaviours and actions at KGH must reflect the core principles to ensure patient and family engagement. In addition, this resource provides a patient and family advisory council terms of reference. By understanding and communicating using the same terms, patient advisors can be more involved in making recommendations that impact the experience of patients and families.
SourceKingston General Hospital (KGH)
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Patient and Family-Centred Care ToolkitThe Patient and Family-Centred Care (PFCC) Toolkit is designed to serve as a guide and aid in the implementation of PFCC improvement projects. It is divided into three sections:
• An introduction to PFCC and top tips for success
• A step-by-step guide that breaks down the implementation of a new improvement initiative into six steps
• A Tools Centre
The Tools Centre provides summaries, key points, and related videos or case studies on the following patient engagement and measurement techniques relevant for PFCC projects: process mapping, shadowing, patient stories, driver diagrams, the PDSA model for improvement, and snorkeling. Attached documents include a shadowing field guide, a sample process map, and a PFCC sample measurement dashboard.
SourceKing's Fund
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateN/A
Patient and Public Advisors 101This one-page document provides healthcare providers with an overview of engaging with patient and public advisors in healthcare. It gives healthcare providers information on an advisor’s role, their importance, and how to support them.
SourceVancouver Coastal Health
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Patient and Public Engagement Evaluation ToolkitThe Evaluation Toolkit, designed for healthcare providers, provides stakeholders with tools to evaluate patient and public engagement initiatives in health care and health research.
SourceCentre for Excellence on Partnership with Patients and the Public
CategoryMonitor & Evaluate, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Patient and Public Engagement Planning TemplateThis planning template outlines a variety of considerations when planning research projects that aim to meaningfully engage with patients and the public. The template can also be used to plan general projects that are not research focused.
SourceThe Newfoundland and Labrador Support Unit for People and Patient-Oriented Research and Trials Unit
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Publication Date2016
Patient and Public Involvement – A Toolkit for DoctorsThis toolkit has been developed to provide guidance to General Practitioners (GPs)
and Practice Managers on how to effectively involve patients and the public in
healthcare planning and delivery
SourceBritish Medical Association (BMA)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateJanuary 2015
Patient Centred Leadership & Principle Based Decision MakingThis tool provides a guide for healthcare professionals and patients on ways they can contribute to principle-based decision making in patient centred care. It outlines KGH’s application of these principles and how they complement those in the Accountability for Reasonableness tool (A4R). A4R is used as a framework to support fair priority setting that ensures relevance, publicity, revision, empowerment, and enforcement. When implementing principal based decision making processes, the following are factors for consideration:
- Describe the Issue
- Describe the Decision Making Process
- Describe the Change Management Plan
- Describe the Communication Plan
- Describe the Evaluation
SourceKingston General Hospital (KGH)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Patient Centred Leadership: Guide for Committee/Council ParticipantsThis tool provides points to consider for patient committee participants, including healthcare providers and patient advisors, to ensure that meetings reflect the principles of patient- and family-centred care which include respect and dignity; information sharing; participation and collaboration.
SourceKingston General Hospital (KGH)
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Patient Centred Leadership: Guide to Chairing Effective MeetingsThis resource provides the points to consider in ensuring that meetings reflect the principles of patient- and family-centred care. Using these principles to guide the behaviours and actions of the healthcare organization, allows for policies, projects and other initiatives to focus on the patient experience.
SourceKingston General Hospital (KGH)
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Patient Centred Leadership: Guide to Preparing Briefing NotesThis guide provides a template for developing briefing notes to ensure principle-based decision making at patient and family advisory council meetings. KGH’s principles are aligned with Accountability for Reasonableness (A4R) framework, which supports fair priority setting by ensuring consideration to the following principles: relevance, publicity, revision, empowerment, and enforcement. These principles are reflected in the behaviours and actions at KGH, including preparation of briefing notes. With the influence of these principles, KGH transforms the patient experience.
SourceKingston General Hospital (KGH)
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Patient Engagement – Catalyzing Improvement and Innovation in HealthcareThis casebook provides compelling examples of healthcare organizations in Canada, the US and England that have advanced patient-centred care and patient engagement. These selected healthcare organizations have demonstrated how engaging with patients has contributed to improvements in care, outcomes and experiences of patients and families. By detailing these organizations’ strategies, investments and experiences, the casebook provides ideas and inspiration when undertaking similar patient engagement initiatives.
SourceLongwoods
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateDecember 2016
Patient Engagement Guidelines for Canadian Radiation Treatment ProgramsThese guidelines promotes partnership and provides activities for radiation treatment programs to engage patients and families in the safety and quality of their care, as well as ensuring engagement in program planning. The guide emphasizes not only improvement of quality and safety, but the meaningful incorporation of the patient voice.
SourceCanadian Partnership for Quality Radiotherapy
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateJune 2016
Patient Engagement Heard and Valued HandbookThis tool for engaging patients includes considerations for conducting patient engagement in a gender-sensitive, inclusive, empowering, and meaningful way, from the planning stages through to implementation and evaluation.
SourceFraser Health Authority
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateSeptember 2013
Patient Engagement Heard and Valued WorkbookThe purpose of this workbook is to assist healthcare decision makers to plan, implement, and evaluate patient engagement processes with a focus on engaging patients whose voices have not traditionally been heard in healthcare planning. The issues being explored in this workbook are not simple and thus the workbook is not designed to provide the one “right” way to engage patients; rather, it provides a way of thinking about patient engagement to help make it more inclusive and useful for everyone involved. The questions presented are intended to create discussion among the planning team in order to help create a in a gender-sensitive, inclusive, empowering, and meaningful process of patient engagement.
SourceFraser Health Authority
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateSeptember 2013
Patient Engagement in Health Research: A How-to Guide for Patients This guide, designed for patients, provides an overview of patient-oriented research, health research and tips for engaging in health research. The guide provides important considerations for patients in the engagement process over five steps: Why, Who, How, Engage, and Evaluate.
SourceAlberta Innovates
CategoryAssess
Language AvailabilityEnglish
CountryCanada
Publication DateMay 2018
Patient Engagement in Health Research: A How-to Guide for Researchers This How-to Guide for Researchers introduces researchers to patient engagement in health research, provides examples of patient engagement in health research, and walks readers through five steps exploring why they should engage patients in health research, who they should engage, how to engage, and practical steps for engaging and evaluating the engagement.
SourceAlberta Innovates
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateMay 2018
Patient Engagement in Research: A Toolkit for Patient PartnersThe Patient Engagement Resource Centre (PERC) aims to encourage and support meaningful patient engagement in primary health care settings in Ontario. The purpose of this toolkit is to support patient engagement initiatives in research. The toolkit outlines information regarding research cycles, team member responsibilities and roles, tips on effective communication, collaboration, and conflict resolution. Additionally, templates designed for patient partners are included to assist in facilitating patient partner engagement in research.
SourcePatient Engagement Resource Centre (PERC)
CategoryMonitor & Evaluate, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication Date2019
Patient Engagement Learning Series This webinar series provides a comprehensive review of education and training to develop skills for authentic patient engagement across BC. There are a variety of topics that address the current needs faced by patient partners, and the series is designed to strengthen the partnerships between patients and health care providers.
SourcePatient Voices Network
CategoryDesign
Language AvailabilityEnglish
CountryCanada
Patient Experience Advisor HandbookThis handbook provides prospective patient experience advisors with a clear understanding of their expected roles, responsibilities and expectations to be successful. It also outlines how to incorporate KGH’s core principles of patient- and family-centred care – dignity and respect, information sharing, participation, and collaboration – when engaging with patients and families as a patient experience advisor. Included in this handbook is the application process and form used in becoming a patient experience advisor at KGH which can be applied to any organization.
SourceKingston General Hospital (KGH)
CategoryImplement, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Patient Experience Advisor Satisfaction SurveyThis survey, for patient experience advisors, measures both the satisfaction level and experience of patient experience advisors. Engaging advisors in providing feedback allows healthcare organizations to understand ways to improve and better support patient experience advisors that they work with.
SourceKingston General Hospital (KGH)
CategoryMonitor & Evaluate, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Patient Experiences with Short-Stay Mental Health and Substance Use Services in British ColumbiaThe Canadian Mental Health Client Experience Questionnaire was selected to measure patient and client experience of care in mental health and substance use settings in British Columbia. The survey asked mental health patients and people experiencing substance use problems in short stay inpatient settings about their experience with the quality of care and services in 71 facilities (102 units/sites) across the province. In order to make the questionnaire more applicable for substance use clients, and to meet the specific needs of British Columbians, some modifications were made to the original survey tool after extensive field testing with patients/clients in both subsectors within the adult and youth populations. Changes were made in consultation with the B.C. patient satisfaction steering committee and the mental health and substance use (MHSU) consultation group, a group of subject matter experts providing guidance and direction to survey work for this sector.
SourceBritish Columbia Ministry of Health
CategoryMonitor & Evaluate, Design
Language AvailabilityEnglish
CountryCanada
Publication DateNovember 2011
Patient Flow ToolkitThe Patient Flow toolkit assists organizations with improving the patient flow in an emergency department (ED) setting so that patients receive the right care, in the right place, by the right teams across the continuum of care, ultimately shortening wait times in the ED. The 3 modules – interdisciplinary rounding, alternating level of care and transfers of care – provide healthcare providers with background information, self-assessment tools and an implementation guide for designing and implementing an improved patient flow process for an ED setting.
This tool was developed by Health Quality Council in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI's Partnering with Patients and Families for Quality Improvement Collaborative.
SourceHealth Quality Council (Saskatchewan)
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateApril 2016
Patient Guide to Safe Surgery This resource provides a list of tips for patients, families and caregivers to ensure engagement and safety in all phases of their surgeries – from preoperative consultations with surgeons, information for preparation before surgery, after surgery, and important considerations for discharge.
SourceAmerican Academy of Orthopedic Surgeons
CategoryImplement, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateDecember 2013
Patient leadership: Taking patient experience to the next level?This resource describes how patients and caregivers, acting as leaders, can improve the experience of care. It reviews four case studies and gathers the following main points in order for patient leadership to have a significant impact on improving experience of care:
• Health organizations should invest in patient leaders
• Put robust feedback mechanisms in place
• Develop the culture and systems to act on feedback
SourceNational Health Service (NHS)
CategoryMonitor & Evaluate, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication Date2015
Patient Oriented Discharge Summary (PODS) ToolkitThis toolkit, for healthcare providers, assists in improving patient-centeredness during discharge through the delivery of a Patient Oriented Discharge Summary (PODS). Within each step of the process are tools in facilitating that step of the initiative:
- Understand a PODS initiative
- Assess your current discharge process
- Implement a PODS initiative
Within the implementation process, the tools provided are used to train and educate staff, patients, and caregivers about what PODS is, how it was developed and tips for success.
Although the whole toolkit is only available in English, the PODS form is available in English, French, Arabic, Bengali, Chinese, Hungarian, Italian, Korean, Portuguese, Russian, Spanish, Tagalog, Tamil, Urdu and Vietnamese.SourceUniversity Health Network (UHN)
CategoryImplement, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Patient partner compensation in research and health care: the patient perspective on why and how This article, authored by patient partners, provides guidance on patient compensation for people involved in research or quality improvement within healthcare, who engage patients as partners. The article defines core principles behind compensation, and the patient partners outline how these principles can be put into practice in a valid way while valuing the contributions of the patient partners to the health research or quality improvement project. This article is grounded in the experience of four patients who have extensive experience in patient and public involvement.
Richards, Dawn P.; Jordan, Isabel; Strain, Kimberly; and Press, Zal (2018) "Patient partner compensation in research and health care:
the patient perspective on why and how," Patient Experience Journal: Vol. 5 : Iss. 3 , Article 2.
Available at: https://pxjournal.org/journal/vol5/iss3/2
SourcePatient Experience Journal
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Patient Partner PreparationThis tip sheet provides suggestions for hosting a preparation session for patient partners and health care providers before an engagement opportunity takes place. The primer outlines topics that should be covered in a preparation session, as well as important next steps to ensure patient partners feel prepared for participating in engagement. This tip sheet is specific to engagement activities in the Patient Voices Network but can be adapted across healthcare settings.
SourcePatient Voices Network
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateMarch 21, 2018
Patient Safety - Be InvolvedThis resource provides strategies for patients and families, and healthcare providers working together in making sure patients and their families have a safe and positive experience. The brochure included, for healthcare providers, engages patients and their families in being more involved about their care, resulting in better and safer results.
SourceCapital Health
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Patient Safety Framework for AlbertansCreated with input from the public, including patients and families, this patient safety framework guides, directs and supports continuous and measurable improvement of patient safety. It provides organizations and healthcare providers with an approach for providing safe care based on key principles. The guide provides strategies for developing patient safety policies and procedures based on the outlined principles. Engaging patients occurs in the planning and decision-making process of system improvements for safety, reassuring their care is safe and effective.
SourceHealth Quality Council of Alberta (HQCA)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateSeptember 2010
Patient Stories: A Toolkit for Collecting and Using Patient Stories for Service ImprovementThis concise toolkit provides information and practical tools to integrate patient stories into your improvement initiatives. It has four components:
• How to use patient stories for service improvement
• How to collect and use your own patient stories
• How you can share patient stories across the system
• Templates and additional resources
The templates and resources section includes participant information sheets and consent forms for different settings, interview guides and question prompts, and promotional material designed to explain the initiative to patients.
SourceDepartment of Health, Government of Western Australia
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryAustralia
Publication DateOctober 2008
Patient Voices Network: Considering DiversityConsidering diverse voices and diverse patient experiences is crucial in health care decision making. It is important to consider whether the diversity of the patient partners and those engaged in decision making or projects reflects the populations it will be serving. This resource provides tips to ensure diverse groups of patient partners are engaged in projects, providing tips for targeted recruitment, and targeting a diversity of health experiences.
SourcePatient Voices Network
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Patient Voices Network: Engaging Young AdultsEngaging young adults and young patient partners promotes the involvement of diverse ages and perspectives in health care. There are many unique barriers faced by young patient partners that must be considered. This resource provides tips and key considerations when recruiting and engaging young patient partners, including communication tips, benefits, logistics and tips for specific groups of young adults.
SourcePatient Voices Network
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Patient/Family Advisory Councils in Ontario Hospitals – At Work, In Play
This report investigates the evolving function and best practices of Ontario’s hospital-based Patient and Family Advisory Councils (PFACs) to advance patient/family engagement and patient-centred care. This 3-part preliminary report aims to guide, connect and inspire, and presents thematic findings with examples of challenges and successes (part 1); quantitative data (part 2); and listings of PFAC initiatives, with contacts (part 3).
Part 1 highlights case studies of PFACs, including types of policies used, programs and projects, and where these councils have had the greatest impact. Organizations looking to develop PFACs as a form of engaging with patients can use the policies and practices in these case studies as inspiration.
SourceChange Foundation
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateApril 2014
Patient-Centered Care Improvement GuideFunded by the Picker Institute, this Patient-Centered Care Improvement Guide is designed as a practical resource for organizations striving to become more patient-centered, yet perhaps struggling with how to do so. Wherever your organization is along the spectrum of patient centered care implementation―whether just starting to contemplate opportunities for improvement, looking to revitalize a fading commitment or working to ensure that an established patient-centered culture is sustained over time―we are confident that you will find within these pages constructive strategies that will guide you on your way.
SourcePlanetree, Picker Institute
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateOctober 2008
Patient-Centred Healthcare Indicators ReviewThe Review, launched at IAPO’s 5th Global Patient Congress 2012 aims to identify and explore current efforts to measure the patient-centredness of healthcare providers, organizations, national health systems and other stakeholders involved in healthcare provision.
SourceInternational Alliance of Patients' Organizations (IAPO)
CategoryMonitor & Evaluate
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateOctober 2012
Patient-led Assessments of the Care Environment (PLACE)Patient-led Assessments of the Care Environment (PLACE) is the system used to assess the quality of the patient environment in NHS funded hospitals, hospices, and day treatment centres. Patient assessors are recruited, trained, and provided with assessment forms to evaluate how the care environment supports patient’s privacy and dignity, food, cleanliness, and general building maintenance, engaging patients on the level of quality assessment and evaluation.
This resource includes all the necessary assessment forms and supporting guidance documents used by NHS organizations to carry out PLACE assessments, including guidance on recruiting and training patient assessors.
SourceNHS England
CategoryMonitor & Evaluate, Implement
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateN/A
Patient-Oriented Research Pathways Self-Assessment Readiness Tool for ResearchersThis tool is designed to assist researchers who are interested in patient-oriented research and to assess their readiness to participate and engage with patients and caregivers in health research through a patient-oriented approach.
SourceBritish Columbia (BC) SUPPORT Unit
CategoryAssess
Language AvailabilityEnglish
CountryCanada
Publication DateOctober 2019
Patients and Families as Advisors in Design PlanningThis checklist describes ways in which patients and families can serve as advisors and participants in all stages of the design planning process. Roles for patient and family advisors are envisioned in early planning stages, active planning stages, and late planning stages. Additional information on the process of engaging patients and families in design planning is available on IFPCC’s website under “Environment and Design” in “Topics.”
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryAssess
Language AvailabilityEnglish
CountryUSA
Publication DateAugust 2012
Patients and Families as Advisors in Primary Care: Broadening Our VisionThis resource offers bullet point suggestions for ways that patients and families can serve as advisors in ambulatory care. It lists possibilities in four areas:
• Councils, Task Forces, and Work Groups
• Clinic Programs and Services
• Physician and Staff Education
• Evaluation or Clinic or Program
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateJanuary 2009
Patients Included: Conference CharterThis charter, designed and drafted with input from the public, provides conference organizers with the necessary criteria to obtain the Patients Included designation for their event. This designation, and this charter, provide thoughtful considerations for conference organizers when they are building their event that allow for meaningful and equitable patient and family engagement. Following these guidelines will help to facilitate a welcoming atmosphere that moves beyond having patients as guests at the table, and as true partners in the event.
SourcePatients Included
CategoryDesign, Assess
Language AvailabilityEnglish
Country
Publication DateApril 2015
Paying Peers in Community Based Work: An Overview of Considerations for Equitable CompensationThis guide provides an overview of considerations for equitable compensation in community-based participatory research. This approach to research involves community partners and peers in the research process. Community-based research can also provide employment and training opportunities for members of the community, and a best practice of this approach includes compensation. This guide, developed with input from participatory researchers, and peers, identifies issues in compensation and provides considerations for equitable payment.
SourceBC Centre for Disease Control
CategoryDesign, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateFebruary 2018
PC P.E.A.R.L.S.®: 7 key elements of person-centred careDeveloped by the Alzheimer Society of Canada (ASC), PC P.E.A.R.L.S are seven key elements in planning and sustaining a culture change and providing person-centred care. Within each of the seven elements – person and family engagement, care, processes, environment, activity & recreation, leadership, and staffing – the resource provides examples and strategies for engaging with people with dementia, families, friends, and caregivers. The elements focus on people with dementia living in long-term care but are applicable to patients in all healthcare settings.
SourceAlzheimer Society of Canada (ASC)
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication Date2014
Peer Engagement Principles and Best Practice: A Guide for BC Health Authorities and Other ProvidersThis set of peer engagement principles and best practices were designed with peer researchers, advisors and health authority representatives to guide meaningful engagement during health service design and delivery. The guide outlines the principles of peer engagement, the importance of increase representation of peer voices in health service planning and policy development, how to foster meaningful inclusion and capacity building, a peer engagement checklist and steps for before, during and after engagement.
SourceBC Centre for Disease Control
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateJanuary 1, 2018
Peer Engagement Principles and Best PracticesThis resource helps enhance peer engagement through the use of best practice guidelines developed by BC Centre for Disease Control. It provides background of the Peer Engagement and Evaluation Project and its principles. Additional resources are included at each step of engagement from preparing to engage through to evaluation of engagement.
SourceBritish Columbia Centre for Disease Control
CategoryDesign
Language AvailabilityEnglish
CountryCanada
Peer Payment Standards for Short-Term EngagementsPeers and individuals with lived experience should be engaged in the design and delivery of health services, programming and policies to help to inform the work and increase access to services. This guide was created based on engagement with different peers and stakeholders to inform compensation guidelines for peers during short-term engagements. Short-term engagements may include attending meetings as an expert or advisor, and advising on a policy or program design. The payment standards help to inform organizations of fair and equitable payments for peers and people with lived experience during engagement.
SourceBC Centre for Disease Control
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateFebruary 2018
Peerology: A guide by and for people who use drugsThis resource, designed by people who use drugs, serves as a guide for those with lived and living experience to engage and to get involved in different health programming. This guide overviews the importance of language, examples of organizations who demonstrate leadership by peers who use drugs, strategies for enabling leadership, getting involved, self-care, and setting up programs that are by and for people who use drugs.
SourceCanadian Aids Society
CategoryAssess
Language AvailabilityBilingual
CountryCanada
Publication DateJune 2015
People & Participation: How to Put Citizens at the Heart of Decision-MakingThis guide explores the opportunities and issues facing public participation practices in institutions and organizations. The guide aims to help people understand more about the practical workings of participation, so that they can do it better, and to provide new frameworks for assessing different participation methods. The document is split into three sections:
• Introducing participation
• Planning for participation
• Methods for participation
Seventeen methods are discussed in depth, including citizen’s panels and juries, deliberative mapping, participatory strategic planning, and youth empowerment initiatives.
SourceInvolve
CategoryDesign
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateDecember 2005
Person/Patient and Family Engagement (PFE) – Healthcare CommunitiesThis resource is a list of strong tools to support health care systems, policymakers and providers in their implementation of Person/Patient and Family Engagement. Person/Patient and Family Engagement (PFE) is a way to describe people, their families, and health professionals working together in collaboration. PFE builds relationships between the individual seeking care, the provider, and the healthcare system.
SourceAmerican Institutes for Research (AIR)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication Date2021
Person-centred Care Assessment Tool (P-CAT)The Person-centred Care Assessment Tool (P-CAT) is a self-assessment tool designed for use by nurses, that aims to measure the extent to which the care within an organization is experienced by staff as being person-centred. It is a questionnaire consisting of 13 statements about care that requires staff to rate the extent to which the statements correspond to their experience. The score in the assessment tool can then be averaged across participants, to serve as an indicator to staff on where changes need to be made in their practice to facilitate and improve person-centered care.
The P-CAT has been tested and studied in Europe and other parts of the world and found to be valid and reliable.
SourceLa Trobe University
CategoryMonitor & Evaluate, Assess
Language AvailabilityEnglish
CountryAustralia
Publication Date2013
Person-Centred Care Resource CentreThe Person-Centred Care (PCC) Resource Centre is a UK based resource produced by The Health Foundation. The resource centre is designed to help healthcare professionals implement a more person-centred healthcare system that aims to support people to more effectively manage and make informed decisions about health and care.
The PCC resource centre identifies two main areas of PCC: shared decision making (SDM) and self-management support (SMS). It introduces both concepts, includes spotlights on successfully implemented PCC programs, and provides information and resources on:
• Getting started (including who to involve)
• Setting up a new programme
• Implementing the new programme
• Training for patients
• Practitioner development
• Improving systems and processes
• Measurement and evaluation
The site also contains a vast resource section containing additional information and evidence for PPC, guidelines, tools, and materials for both patients and health practitioners.
SourceHealth Foundation
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateN/A
PFCC Go GuidesThe PFCC Go Guide, and its accompanying document, “Go Shadow,” outline the Patient and Family Centered Care Methodology and Practice (PFCC M/P): a six step performance improvement tool that aims to enable care givers to redesign the delivery of care through the active involvement of patients and families. The technique involves taking steps to understand what patients and families currently experience, and then to partner with them to co-design services, interactions, processes, and environments to create exceptional care experiences.
Each step of this process is carefully explained in the PFCC Go Guide. There are numerous examples, case studies, extra tips for implementation, and suggested guidelines for necessary documentation.
SourcePFCC Innovation Center
CategoryMonitor & Evaluate, Implement, Assess
Language AvailabilityEnglish
CountryUSA
Publication Date2012
Plan-Do-Study-Act (PDSA) Observations for Bedside Transfer of Accountability (TOA)Co-created with a patient and family member, this observational tool assists organizations with evaluating their bedside shift change report. The tool assesses the level of patient engagement during a bedside shift change report. It can be used to understand the current practices of a shift change report in organizations looking to undertake a similar initiative or evaluating a successfully implemented, patient-centred, bedside shift change report.
This tool was developed by Huron Perth Healthcare Alliance (HPHA) in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative.
SourceHuron Perth Healthcare Alliance (HPHA)
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Playing It Safe: My Medication ChecklistThis resource prepares patients, families or caregivers with a list of questions to ask when prescribed a new medication. In this printable form, there is a personal medication list that can be used to keep track of medications, and to bring to the hospital and doctor’s appointments.
SourceHealth Quality Council of Alberta (HQCA)
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Policies Supporting Patient- and Family-Centred CareThis resource features three examples of existing KGH policies that were revised using patient and family inclusive language in ensuring the needs and perspectives of patients, families and caregivers are being actively promoted and supported. KGH’s principles are reflected in these newly revised policies and assist in transforming the organization’s culture towards more patient-centred care. All policies at KGH are developed using this type of inclusive language.
SourceKingston General Hospital (KGH)
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Post Discharge ToolThe post-discharge tool is used by patients and their families in keeping the patient’s recovery on track, resulting in reduced likelihood of readmission. This tool provides patients with a template which provides them to outline important information regarding their discharge and care plan, such as follow-up appointments, diagnosis/condition, medication list and tips given by the doctor/nurse.
SourceNational Patient Safety Foundation (NPSF)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Power of RelationshipsOne of six briefs outlining themes discovered by teams funded to conduct patient engagement projects.
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryDesign, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve CareThis guide is written for family members and healthcare providers who are working together to improve healthcare for children. It emphasizes the equal role that parents and providers play in child healthcare and the value of team based, collaborative healthcare. The guide includes an introduction to the value of working together and learning collaboratives, a section designed for parents/families and a section designed for practitioners.
The section for parents includes stories from other parents who are working with providers, examples of parent involvement in collaboratives, and tips to maximize your effectiveness as a patient advisor. The section for providers includes advice on understanding the patient experience, tips for providers working with parents, and suggestions and examples on how to partner with parents to improve care.
SourceNational Institute for Children's Health Quality
CategoryDesign, Assess
Language AvailabilityEnglish
CountryUSA
Publication Date2012
Practical approaches to co-production: Building effective partnerships with people using services, carers, families and citizensThis guide, co-produced by carers, provides a brief overview of the different approaches and principles to co-production within health and social care. It also highlights different strategies for involving people, including:
- Ensuring diverse groups can participate
- Collaborating with user-led organizations (ULO)
- Engaging carers in co-production
- Working with citizens in creating Participatory Budgets
- Working with small social enterprises
Throughout the guide are case studies of different organizations’ approaches and implementation strategies for co-production.
SourceGovernment of the United Kingdom Department of Health
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateNovember 2010
Practical Guide for Engaging Stakeholders in Developing Evaluation Questions This guide describes a five-step process to engage stakeholders in developing evaluation questions for programs, processes, products, policies and initiatives.
• Step 1: Prepare for stakeholder engagement
• Step 2: Identify potential stakeholders
• Step 3: Prioritize the list of stakeholders
• Step 4: Consider potential stakeholders’ motivations for participation
• Step 5: Select a stakeholder engagement strategy
By involving stakeholders early in the evaluation process, you’re able to receive the perspectives, experiences, and insights of different individuals and groups. This resource also includes four worksheets and a case example to further facilitate the planning and implementation of a stakeholder engagement process.
SourceRobert Wood Johnson Foundation (RWJF)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateJanuary 2009
Practice Improvement Team (PIT) ToolkitTo improve the practice, Practice Improvement Teams Toolkit is designed for engaging the ideas and wisdom of the frontline staff, a member of the clinic leadership team, and two patients who experience the staff’s work. This toolkit provides some guidelines, supplemented by documents, in launching a Practice Improvement Team (PIT), being an effective PIT, and supporting patient partnership. Each section provides handouts, ensuring patients are engaged throughout the initiative. Although meant for PIT, this toolkit can be adapted to any patient advisory council.
SourceCambridge Health Alliance (CHA)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Preparing for Surgery: Health Condition ChecklistThis resource, designed to help patients prepare for orthopedic surgery and increase safety, provides an overview of managing various conditions and other health issues before surgery. Tips are provided to ensure they are aware of the importance of optimal health prior to surgery.
SourceAmerican Academy of Orthopedic Surgeons
CategoryImplement, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateMarch 2014
Preparing for Surgery: Medication Safety Checklist This resource provides information on the importance of maintaining an up to date list of medications prior to surgery, as well as a preoperative medication safety checklist to ensure medication reconciliation and safety prior to surgery.
SourceAmerican Academy of Orthopedic Surgeons
CategoryImplement, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateMarch 2014
Presentations by Patients and Families: Staff Liaison Coordination and Preparation RolesThis tool provides a step by step guide to assist staff in the coordination and preparation of presentations by patients and families. The checklist is chronological and includes both questions to consider and tips for planning the presentations, assisting during the event and following up with the presenters.
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryMonitor & Evaluate, Design, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateOctober 2010
Primary Care Patient Experience SurveyThe Primary Care Patient Experience Survey is designed to be filled out by patients at health centres, clinics, or offices. The survey aims to provide precise feedback on six sections of the patient’s experience:
• Contacting the clinic, centre, or office
• Arriving and waiting for an appointment
• Their appointment
• Their overall experience of their most recent visit
• Their experiences with the centre, clinic, or office over the last year
• Context and Demographics
The survey concludes with a space for optional written feedback, asking for two things that were done well, two things that could be improved, and free space for any additional comments.
In addition to French and English, this survey is available in Arabic, Chinese, Spanish, and Urdu (downloads available from link).
SourceHealth Quality Ontario (HQO)
CategoryMonitor & Evaluate, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateApril 2015
Primary Health Care Patient Experience SurveyThe Primary Health Care Patient Experience Survey aims to support the improvement of patient experience in a primary health care setting. This survey, given to patients, evaluates the level of patient-centred care received. Organizations are encouraged to adapt the survey to meet the needs of the organization.
This survey was developed by Saskatchewan Health Quality Council (HQC) in collaboration with the Canadian Foundation for Healthcare Improvement (CFHI) during CFHI’s Partnering with Patients and Families for Quality Improvement Collaborative.
SourceSaskatchewan Health Quality Council (HQC)
CategoryMonitor & Evaluate, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Primer on Public InvolvementThis guide provides information on the role and parameters of public involvement in the Canadian health system. It discusses the role of public involvement within democratic governance generally, different methods of public involvement, and the necessary conditions for successful public involvement.
The guide concludes with an extensive appendix of public involvement methods. The appendix offers a description of each method, its strengths and weaknesses, a list of examples, and a series of references. Methods covered include: citizen juries and panels, consensus conferences, scenario workshops, deliberative polls, and citizens’ dialogues.
SourceHealth Council of Canada
CategoryImplement, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateJuly 2006
Principes directeurs – Dédommagement financier pour la recherche en partenariat avec les patients et le public Available in French only.
This document is intended for researchers, clinicians, decision makers, patients and citizens involved in a partnership approach with patients or members of the public under Quebec’s SPOR Support Unit. The purpose of this document is to provide financial compensation to patient partners and members of the public who act as partners for research activities under projects supported by Quebec’s SPOR Support Unit, including governance, priority setting for research, engagement as a member of a research team and teaching. In order to ensure that patient partners and members of the public receive equitable compensation, Quebec’s SPOR Support Unit created guiding principles for the financial compensation of patient partners (hereinafter "the Guiding Principles"). "). Through its Executive and Scientific Branch, Quebec’s SPOR Support Unit adopted the Guiding Principles on May 16, 2018, which apply to financial compensation claims as of May 16, 2018. The guiding principles are subject to an annual reassessment. The guiding principles reflect the objectives of Quebec’s SPOR Support Unit to create sustainable and long-term resources for a Partnership Strategy with Patients and the Public.
SourceCentre d’excellence sur le partenariat avec les patients et le public, Unité de Soutien SRAP/Québec
CategoryImplement, Design, Assess
Language AvailabilityFrench
CountryCanada
Publication DateMay 2018
Principles for Patient-Centered CareThe Eight Picker Principles of Patient-Centered Care embody Picker Institute’s conviction that all patients deserve high-quality healthcare, and that patients’ views and experiences are integral to improvement efforts.
SourcePicker Institute
CategoryImplement, Assess
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Process Mapping - An OverviewMapping patient journeys is an essential tool to reduce delays and highlight improvements for patients and staff. This technique separates and maps out procedures and work processes that:
• Directly benefit patients (hands on time, decision making)
• Supports the benefit of patients (eg staff training)
• Does not benefit patients (eg time spent looking for something that isn't in the right place)
The NHS Institute for Innovation and Improvement webpage on Process Mapping – An Overview provides information on:
1. What is patient journey mapping?
2. How to use process mapping
3. When process mapping works best
4. Examples of process mapping techniques including:
• Process mapping - alternatives ways to conventional process mapping
• Process templates
• Walkthrough a patient journey
• Spaghetti diagram
• Value added steps
• A picture of time and resources (process templates) required by a single patient
• Reviewing the patient pathway; mapping your last ten patients - using patient files and records
• Getting patient perspectives
• Care pathway analysis
5. Helpful resources and tools
The NHS Institute’s library of quality and service improvement tools is a resource for both clinical and operational staff looking to improve their knowledge of tried-and-tested tools and techniques for improving patient care.
SourceNHS Institute for Innovation and Improvement (NHS Institute)
CategoryDesign, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication Date2008
Project BOOST (Better Outcomes for Older adults through Safe Transitions) Implementation Toolkit Project BOOST (Better Outcomes for Older adults through Safe Transitions) optimizes the hospital discharge process and mitigates and prevents known complications and errors that occur during transitions. This guide provides healthcare organizations the tools and resources needed to implement project BOOST and engage patients in all phases of the project plan – planning, implementation, intervention, surveillance and management. This guide focuses on improving care transitions in older adults but can be adapted to general care transitions.
This resource is free of charge; however, it requires you to create a login.
In 2014, SHM developed a revised 2nd edition of this guide which is available for purchase here.
SourceSociety of Hospital Medicine (SHM)
CategoryMonitor & Evaluate, Implement, Design
Language AvailabilityEnglish
CountryUSA
Publication Date2008
Public and Patient Engagement Evaluation ToolThis tool includes three surveys which provide feedback and suggestions from different points of views regarding an engagement activity. Each survey is tailored to a specific role – participants (including patients, families, and community representatives), administrators, and organizations – involved in the activity. In addition, organizations can use these surveys to track trends and document improvements in patient engagement.
This resource is free of charge; however, it requires you to create a login.
SourceMcMaster University
CategoryMonitor & Evaluate, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateJune 2015
Public Deliberation: A Manager's Guide to Citizen EngagementThis guide from IBM discusses a reform in citizen engagement – one from citizens as consumers to citizens as active shapers of policies and programs – and how organizations can facilitate that reform in their own practices. The guide is divided into four sections:
• A quick inventory of existing policy frameworks for citizen engagement and their shortcomings
• An introduction to the principles of deliberative democracy
• A discussion of the possibilities for online engagement
• An inventory of the most promising emerging, innovative techniques for managers to use in engagement
Although the guide is written with government bodies in mind, the principles for engagement are relevant across organizations and are easily applicable to patient and family engagement in health care.
SourceIBM Centre for the Business of Government
CategoryDesign
Language AvailabilityEnglish
CountryUSA
Publication DateFebruary 2006
Public Participation FieldbookThis resource outlines building blocks for effective public participation including:
• Thinking about designing participation processes
• Groups and teams
• Leadership and policy change
• Tools and techniques
• Sample teaching modules
Each section consists of an overview, handouts, exercises and worksheets on incorporating patient and community participation in change efforts like a policy change or a new or modified program, project, or other initiative.
SourceUniversity of Minnesota Extension
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication Date2007
Public Participation: Principles and best practices for British ColumbiaThis review focuses on understanding the best practices governments can take to involve a broader audience in shaping public decisions. A framework for public participation was developed and is presented based on identification of these best practices throughout Canada.
SourceOffice of the Auditor General of B.C.
CategoryAssess
Language AvailabilityEnglish
CountryCanada
Publication DateN/A
Quality Improvement Primers: Voice of the CustomerThis resource describes the need for a Quality Improvement (QI) initiative in understanding the needs of both patient and families and healthcare providers. With feedback from both parties, organizations can actively engage customers in co-designing their entire QI initiative. It also includes recommended methods for gathering and integrating feedback from both parties.
SourceHealth Quality Ontario (HQO)
CategoryImplement, Design
Language AvailabilityBilingual
CountryCanada
Publication DateApril 2013
Quality Improvement Toolkit: For use in age-related resident careThis toolkit is a roadmap designed to help healthcare staff improve quality of care, specifically those working in age-related residential care. It highlights the importance of co-designing solutions with consumers and families in healthcare improvement. Although the overall theme in this toolkit is falls prevention for long-term care patients, the model for improvement can be applied to any quality improvement initiative.
SourceHealth Quality and Safety Commission
CategoryDesign
Language AvailabilityEnglish
CountryNew Zealand
Publication DateMarch 2016
Questions Are the AnswerQuestions Are the Answer assists in engaging patients, families and caregivers with healthcare providers in making decisions about medical treatment options. It provides a list of questions for before, during, and after an appointment. The questions facilitate patients in advocating for their own healthcare safety.
SourceCanadian Patient Safety Institute (CPSI)
CategoryImplement
Language AvailabilityBilingual
CountryCanada
Publication DateJuly 2016
Rare Toolkits: Using Storytelling to Raise Awareness for Your Rare DiseaseThis toolkit provides guidance to patients who would like to share their experience having, or caring for someone with, a rare disease. Patient stories are increasingly shared at medical conferences, during board meetings, and as part of improvement projects. This toolkit provides patients with assistance in writing and telling their story. It includes advice on getting started, questions to consider when writing, and an extensive resource section.
SourceGlobal Genes
CategoryDesign
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Ready, Set, Engage: preparing for engagementOne of six briefs outlining themes discovered by teams funded to conduct patient engagement projects.
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryDesign
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Real Engagement for Real ImprovementOne of six briefs outlining themes discovered by teams funded to conduct patient engagement projects.
SourceCanadian Foundation for Healthcare Improvement (CFHI)
CategoryDesign, Assess
Language AvailabilityBilingual
CountryCanada
Publication DateN/A
Real People, Real Data Tool-kit TemplatesThis resource is a collection of templates and examples which provides healthcare professionals with ways to engage with patients by using their experience story as evidence to shape better decision-making about health policies, services and spending.
SourceConsumer Health Forum
CategoryDesign
Language AvailabilityEnglish
CountryAustralia
Publication DateOctober 2014
Recruiting for DiversityThis guide contains templates, tools and resources for creating a diverse patient and family advisory council. Follow the tips and approaches included to create a diverse and well-represented patient and family advisory council that reflects the communities you work with. A diverse council ensures that the decisions being made reflect, and respond to, a broad range of lived experiences.
SourceHealth Quality Ontario (HQO)
CategoryMonitor & Evaluate, Implement
Language AvailabilityBilingual
CountryCanada
Publication Date2016
Re-Engineered Discharge (RED) Toolkit This toolkit, intended for healthcare providers, assists in improving the discharge processes, thus reducing readmissions. Each phase – implementation, delivery, conducting, and monitor – consists of case studies, guides, and tools for improving the discharge process, including engaging patients at each phase; ensuring their needs are heard. Since the initial creation of this toolkit, AHRQ developed an additional tool – Understanding and Enhancing the Role of Family Caregivers in the Re-Engineered Discharge - to augment the RED toolkit. This supplementary tool includes five steps for integrating family caregivers into the discharge plan.
• Step 1: Identify the Family Caregiver
• Step 2: Assessment the Family Caregiver’s Needs
• Step 3: Integrating the Family Caregiver’s Needs into the After Hospital Care Plan
• Step 4: Share Family Caregiver Information with the Next Setting of Care
• Step 5: Provide Telephone Reinforcement of the Discharge Plan
SourceAgency for Healthcare Research and Quality (AHRQ)
CategoryImplement, Monitor & Evaluate
Language AvailabilityEnglish
CountryUSA
Publication DateApril 2016
Resource Toolkit for Engaging Families and Patients at the Planning TableThe Alberta Health Services Toolkit has a variety of tools useful at all stages of a patient and family advisory council initiative. The toolkit is organized chronologically to guide the user through each step of the engagement process, from initiating an idea through to evaluating the success of the initiative. In addition to opening principles, guidelines, and evidence for the value of patient engagement, tools available include:
• Discussion questions for staff involved in the planning of the project
• Checklists for advisor selection
• Suggestions for where to find advisors and how to recruit a diverse group
• Information packets intended to be given to potential advisors
• Interview questions for advisor recruitment interviews
• Guidelines for setting up an interview format
• Tips and suggestions for staff liaisons
• A survey to assess the effectiveness of collaboration in meetings with the patient and family advisory council
• Guidelines for setting up an evaluation strategy and sample evaluation questions
SourceAlberta Health Services (AHS)
CategoryMonitor & Evaluate, Implement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateApril 2014
Responding to patient safety incidents: the “seven pillars”This resource is a two-year post-implementation report of the “seven pillars” process for patient incident responses at the University of Illinois Medical Center at Chicago (UIMCC). The report describes the “seven pillars” designed for providing all members with the confidence and resources in adopting a culture of safety, transparency, inquiry and medical error disclosure. The pillars include engaging with patients and families during each phase from reporting through investigating, resolution and even system improvement. This resource provides healthcare organizations with the “seven pillars” tool which can be adapted to any patient safety incident disclosure process.
SourceBritish Medical Journal (BMJ) Quality & Safety
CategoryImplement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateMarch 2010
Role description - Co-Chair/Vice Chair Patient and Family Advisory GroupThis resource provides an example of a role description for patient and family advisors who are or wish to be the co-chair or vice-chair of the advisory committee. It outlines:
• Knowledge, skills, abilities and expectations
• Duties and responsibilities
• Time commitment
• Staff roles and responsibilities
• Orientation
SourceAlberta Health Services (AHS)
CategoryDesign
Language AvailabilityEnglish
CountryCanada
Publication DateJuly 2015
Role description - Patient and Family Group AdvisorThis resource provides an example of a role description for patient and family advisors. It outlines:
• Knowledge, skills, abilities and expectations
• Duties and responsibilities
• Time commitment
• Staff roles and responsibilities
• Registration steps
• Orientation
• Feedback and additional support
SourceAlberta Health Services (AHS)
CategoryDesign
Language AvailabilityEnglish
CountryCanada
Publication DateJuly 2015
Rules of Engagement: Lessons from PanoramaLessons from Panorama is a collection of 15 key learnings from The Change Foundation’s two year engagement project, The PANORAMA Panel. The collection is intended to outline key areas of the engagement process that require additional thought and preparation, and provide guidance and suggestions on navigating these areas. Included in the appendices is a list of useful engagement methods, and a draft set of ground rules for dialogue.
SourceChange Foundation
CategoryDesign
Language AvailabilityEnglish
CountryCanada
Publication DateJanuary 2016
Safe system framework for children at risk of deteriorationThe Safe system framework aims to improve the recognition and response to children at risk of deterioration in a hospital setting. Using six core elements with appended tools, the framework assists in improving patient safety:
- Patient safety culture
- Partnerships with patients and families
- Recognizing deterioration
- Responding to deterioration
- Open and consistent learning
- Education and training
The Partnerships with patients and families section describes the responsibilities of different members in the healthcare team, including patients, families, and carers, to assist in reducing the risk of deterioration in children. The resources in this section assists both patients, families, and carers, and healthcare providers in engaging with each other for improving overall patient safety. The framework and appended tools are focused on working with children at risk of deterioration, however, they can be applied to any patient.
SourceRoyal College of Paediatrics and Child Health
CategoryImplement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateJuly 2016
Safety As You Go from Hospital to HomeThis list of suggestions, for patients and their families, assists in ensuring a safe transition from hospital to home. The suggestions are separated in to five categories:
- Medicine for Home
- Follow-Up Appointments
- Home Health Services
- Taking Care of Yourself When You Get Home
- Arriving Home
Each category includes tips for meaningful engagement and questions for your healthcare provider.
SourceInstitute for Healthcare Improvement (IHI)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Safety Is Personal: Partnering with Patients and Families for the Safest CareThis guide and appended tools is a call to action for health leaders, clinicians, and policy makers in taking the necessary steps to ensure patient and family engagement at all levels of healthcare. It provides recommendations to each level of healthcare including patients, families, and the public; leaders of healthcare systems; healthcare clinicians and staff; and healthcare policy makers for advancing patient safety using effective partnerships between these parties.
SourceNational Patient Safety Foundation (NPSF), Lucian Leape Institute
CategoryDesign
Language AvailabilityEnglish
CountryUSA
Publication Date2014
Seamless Transitions: Hospital to Home - GuidebookThis guidebook follows the Seamless Transitions: Hospital to Home project that developed an integrated and person-centered approach for transitions from hospital to home. The guidebook outlines the steps taken to better integrate patients into their discharge planning, and serves as a blueprint for other organizations working to further integrate patients into transitions and implement new models of transition planning.
SourceTrillium Health Partners, Missisauga Halton Local Health Integration Network
CategoryImplement, Design
Language AvailabilityEnglish
CountryCanada
Publication DateJune 2015
Sharing Your Patient StoryThis resource gives patients strategies for telling their story in a genuine way while protecting their personal well-being. The strategies provided can be used for patients telling their story in an interview, written piece or in front of an audience.
SourceSouthern Health
CategoryDesign
Language AvailabilityBilingual
CountryCanada
Publication DateMarch 2017
Sharing Your Story: Tips for Patients and FamiliesThis resource provides tips for patients and families on how to share their story to evoke a long-term change in the health care system.
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryDesign
Language AvailabilityEnglish
CountryUSA
Publication DateAugust 2012
Should Money Come Into It?The Change Foundation has provided the decision tool developed and used internally by the organization to determine if patient engagement participants should be paid. The decision tool consists of a scoring table that measures eight factors: Time, Equity, Vulnerable-Group Status, Challenges, Accountability, Positive Impact, Access, and Other Forms of Recognition. The first five are contributing factors, wherein a high score increases the likelihood of payment, and the last three are mitigating factors, wherein a high score reduces the likelihood of payment. This tool allows payment to be determined on a case-by-case basis, whilst maintaining consistency in the decision making process.
In addition to the scoring table, the Change Foundation provides a summary of the literature search information, the expert interviews, and the feedback from the patient engagement panel that informed the development of the decision tool.
SourceChange Foundation
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Publication DateMarch 2015
Six principles for engaging people and communities: Putting them into practiceDeveloped with input from the community, including patients and families, this guide assists with building the knowledge, confidence and motivation for developing person-centred, community-focused approaches to healthcare. It describes the importance of the principles and the strategies for implementing them. Included are appended case studies to assist organizations with undertaking similar patient-centred initiatives.
SourceNational Voices
CategoryImplement, Design
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateJune 2016
SMART Discharge ProtocolThe SMART (Signs, Medications, Appointments, Results, and Talk with me) tool aims to improve care for patients and families during the discharge process. The tool, supplemented by an implementation presentation, a self-learning packet and FAQs for healthcare staff and clinicians, ensures patients and families are provided with the necessary information to be a partner in their own care and safety when transitioning from the hospital.
This resource is free of charge; however, it requires you to create a login.SourceInstitute for Healthcare Improvement (IHI)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Smart Guides to EngagementThis collection of 15 guides to patient and public engagement (PPE) was put together by the NHS to provide healthcare leaders with pragmatic, relevant, and practical approaches to good patient and public engagement. The Smart Guides include the following modules:
• Get Smart About Engagement
• Working with Lay Members and Patient Representatives
• Working with LINks and Local HealthWatch
• Engagement for Commissioning Success
• Practices and Patient Engagement
• Listening, Learning, and Responding
• Community Development – Improving Population Health
• Working with Local Authority Scrutiny
• Using Social Media to Engage, Listen, and Learn
• Building Public Support for Change
• Developing Pathways: Using Patient and Carer Experiences
• Staff Engagement: Good for Everyone
• Engaging with Individual Patients
• Unlocking the Power of Information
• Equality and Diversity
SourceNHS Networks
CategoryDesign, Assess
Language AvailabilityEnglish
CountryUnited Kingdom (UK)
Publication DateApril 2012 - January 2014
Speak Up: Preparing for Surgery This video provides an overview of the surgical process from a patient’s perspective beginning at the initial decision for surgery, to discharge afterwards. The video emphasizes various considerations for patient engagement and safety throughout the surgical journey, providing tips and actions patients can take along the way.
SourceThe Joint Commission
CategoryAssess
Language AvailabilityEnglish
CountryUSA
Publication DateJanuary 27, 2015
Spectrum of Public ParticipationThe International Association for Public Participation’s Spectrum of Public Participation divides public participation into five levels: Inform, Consult, Involve, Collaborate, and Empower. It was designed to assist with the selection of the level of public participation appropriate for a given engagement initiative. The Spectrum shows that differing levels of participation are legitimate and depend on the goals, time frames, resources, and levels of concern in the decision to be made.
SourceInternational Association for Public Participation (IAP2)
CategoryAssess
Language AvailabilityBilingual
CountryUSA
Publication Date2007
Staff Liaison to Patient and Family Advisory Councils and Other Collaborative EndeavorsThis resource is a guideline for staff liaisons working in healthcare organizations. If offers tips and suggestions on laying the groundwork for patient and family engagement projects, involving other staff members in projects, recruiting patient and family members, and building a network of support within the organization. It is a useful summary of the role of staff liaison for organizations seeking to create such a role or for staff members currently in this role.
SourceInstitute for Patient- and Family-Centered Care (IPFCC)
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateOctober 2010
Starting and Sustaining a Patient Advisory BoardThis resource, developed by the San Francisco General Hospital, is a guide to starting and maintaining patient advisory boards. It offers:
• Information on the roles, responsibilities, and qualities of both patient advisors and patient liaisons
• Recruitment tools (sample fliers, brochures, emails, and cards)
• Guides to conducting an information session, interviews, and meetings
• A monthly meeting checklist
• Tips for meeting facilitation
• Advice on including presenters and guest speakers at advisory meetings
SourceSan Francisco General Hospital
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication Date2014
Stewarding Regional Health TransformationThis guide provides a pathway for teams creating and redesigning local health systems for better healthcare and economic prosperity in their region. In order for change to occur, decision makers must create long-term structures for active engagement of all relevant participants, including residents. This guide will help to:
• Bring to the table the right kind and mix of leaders to act together as stewards of a change process
• Establish shared values and elevate aspirations for better health
• Engage residents in stewardship functions for the long run
• Encourage individuals to step outside their own organizational boundaries
• Design and lead stewardship teams that develop the legitimate authority to steer the system
• Build stewardship structures for the long haul and adapt them over time as the effort progresses
• Anticipate the challenges that will arise from progress and act collaboratively to address them
In addition, it also includes video presentations, case studies and examples of groups who are effectively implementing strategies toward patient engagement. The additional tools will further facilitate the planning and implementation of a transformed system.
SourceReThink Health
CategoryImplement, Design
Language AvailabilityEnglish
CountryUSA
Publication DateNovember 2015
Strategies for Leadership: Patient and Family Centered CareThis Strategies for Leadership toolkit complements previous toolkits and other AHA activities that have focused on safety, effectiveness, efficiency, timeliness and equity in care.
SourceAmerican Hospital Association (AHA)
CategoryAssess
Language AvailabilityEnglish
CountryUSA
Publication DateN/A
Supporting Meaningful Engagement of Patients and Families on Research Teams This resource, developed through a qualitative research study that was co-designed with patients and family members, provides actionable recommendations for leaders, researchers, and patient research partners on facilitating meaningful engagement of patient partners in research. The themes and recommendations emerged from discussions with patients and provide actionable items for researchers and leaders to create a meaningful and engaging environment. The open access research article can be found here: https://doi.org/10.1177/1355819618762960
Black A, Strain K, Wallsworth C, Charlton S-G, Chang W, McNamee K, Hamilton C. What constitutes meaningful engagement for patients and families as partners on research teams? J Health Serv Res Policy 2018. DOI: 10.1177/1355819618762960
SourceJournal of Health Services Research & Policy
CategoryImplement, Design, Assess
Language AvailabilityEnglish
CountryCanada
Publication DateMarch 4, 2018
Surgery: Questions to Ask the DoctorThis tool provides patient, families or caregivers a printable checklist of questions to take to pre-surgery appointments and to ask the surgeon. The checklist provides questions for a variety of scenarios and creates a place for patients, families or caregivers to store all the information about the surgery in one place.
SourceSaskatchewan Surgical Initiative
CategoryImplement
Language AvailabilityEnglish
CountryCanada
Surgery: What to ExpectThis resource provides information for patients, families and caregivers on what to expect during all phases of surgery. General information is provided to help increase patient and caregiver knowledge before, during and after surgery, and promote taking an active role in recovery.
SourceSaskatchewan Surgical Initiative
CategoryAssess
Language AvailabilityEnglish
CountryCanada
Taking Care of My Health CareThis guide, for patients and their families, provides a list of questions to ask when engaging with a healthcare provider. It opens the lines of communication between patients and healthcare providers regarding the patient’s safety and overall care.
SourceNational Transitions of Care Coalition (NTOCC)
CategoryImplement
Language AvailabilityBilingual
CountryUSA
Publication DateN/A
Taking Care of Myself: A Guide for When I Leave the HospitalAdapted from the Re-Engineered Discharge (RED) Toolkit, Taking Care of Myself: A Guide for When I Leave the Hospital is a fill-able guide, for healthcare providers, for providing information patients need to feel empowered when returning home. The guide includes information about medicines, follow-up appointments, appropriate foods to eat and different exercises. By being more involved during their discharge process, patients are able to be a partner in their own care and in turn, reduce the risk of readmission.
SourceAgency for Healthcare Research and Quality (AHRQ)
CategoryImplement
Language AvailabilityEnglish
CountryUSA
Publication DateApril 2010
Taking Charge of your Healthcare: Your Path to Being an Empowered PatientThis toolkit assists patients, their families and providers in planning and working together during hospital transitions to encourage meaningful engagement. It highlights the importance of clear communication and education for patients and families during this process to ensure they feel confident and empowered when returning home. The elements of the toolkit are separated in six sections:
- Staying Safe When You Leave the Hospital
- Talking to Your Doctor or Nurse
- The Emotional Side of Healthcare: Six Tips for Talking to Your Doctor
- Communicating with Patients and Families for Smooth, Safe Transitions
- Gl