This video gives healthcare providers 7 tips for working with patient advisors in co-design. The tips can be implemented in any engagement initiative.

This 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

This 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

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.

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.

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.

This 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.

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.

This 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. 

Developed 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.

CFHI 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

This 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?

The 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

This 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

Co-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. 

• 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

• 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

• 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.

This 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.

IHI 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.

This resource is free of charge; however, it requires you to create a login.

The 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.

This 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.

This 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

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.

The “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?

This 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.

This 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?

This 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 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. 

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

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.

This 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.

Available 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.

This 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.

•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.

NHS 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.

This 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

This 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

• 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

This 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.

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

This 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.

• 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

HCQ’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:

Developed 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.

This 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.

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.

The 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

This 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

This 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:

This 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.” 

The Toolkit consists of:
• Section 1: Introduction
• Section 2: Steps to developing a consumer and community engagement strategy
• Section 3: Tools and resources.

This 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

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.

Alberta 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

This 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.

This 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.

• 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.

The strategies and resources included in the report facilitate development and improvement in these areas.

This 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

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.

This 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.

The 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.

This 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.

• 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.

This 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

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.

Reducing 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.

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.

This 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

This 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.

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

This 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:

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:

This 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.

This 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. 

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.

The 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

Consumers 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.

This 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

Tip 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.

A 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.

This 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.

This 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.  

The 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.

It’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.

This 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.

This 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:

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. 

Available in French only.

The purpose of this document is to enable research teams to establish a clear mandate to engage patient partners or members of the public in research projects.

This resource guides healthcare professionals in effectively involving patients in decisions regarding prescribed medications.  It outlines four key components for medicine adherence

In addition, the guide includes tools and resources to help put the guidance into practice. 

Next 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.

Co-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. 

The 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. 

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.

Created 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

The 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.

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.

• 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.

The 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.

This 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.

This 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.

• 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

Co-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. 

Co-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. 

Created 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:

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.

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.

Co-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

Creating 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.

This 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. 

Using 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.

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

This resource discusses the Carman Framework, which is a model of patient engagement, that outlines the ways patients and families can be involved in different levels of healthcare

This 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.

• 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.

• 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.

This 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.

The Evaluation Toolkit, designed for healthcare providers, provides stakeholders with tools to evaluate patient and public engagement initiatives in health care and health research.

This 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

This 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.

This guide defines terms of reference relevant to involving patients in health research and describes current research related to patient engagement. The engagement of patients at various stages and levels of research is seen as integral to the development, implementation, and ultimate success of the SPOR initiative. In addition, it provides a list of tools and resources, from other patient engagement organizations. 

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.

The 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.

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.

The 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. 

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:

This 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.

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

• 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.

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.

This 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.” 

This 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

This 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. 

This 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:

Seventeen methods are discussed in depth, including citizen’s panels and juries, deliberative mapping, participatory strategic planning, and youth empowerment initiatives.

The P-CAT has been tested and studied in Europe and other parts of the world and found to be valid and reliable.

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.

The 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.

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. 

This 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.

This 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

This guide describes a five-step process to engage stakeholders in developing evaluation questions for programs, processes, products, policies and initiatives.

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.

This 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.

• 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).

The 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.

This 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. 

Available in French only.

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 2^nd edition of this guide which is available for purchase here.

This 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.

This 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:

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.

This resource outlines building blocks for effective public participation including:

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.