Patient Engagement Projects funded in 2010

Through the Patient Engagement Initiative, CFHI, the Health Council of Canada and the Max Bell Foundation partnered to fund 10 intervention projects (see below) in 2010 and an accompanying research project (see below). The three partners’ joint investment of $1.45 million will leverage a further $1.1 million from the selected teams through cash or in-kind contributions (applicants were required to secure matching co-sponsorship support).

All aboard for patient engagement: A readiness toolkit for patients, providers and leaders

Jennifer Rees, Alberta Health Services

The goal of this project is to determine what resources (e.g. tools), preparation (e.g. education) and support (e.g. infrastructure) are needed for patients, providers and leaders to meaningfully and appropriately engage patients in patient-centred system redesign; build capacity for successful patient engagement; “pilot” a resource kit in emerging patient engagement initiatives; and evaluate the impact of educating and preparing patients/providers/leaders for engagement at all levels in the organization.

The project team has completed a literature review and a needs assessment with members (patients, providers and staff) from four Alberta Health Services (AHS) strategic initiatives involving patients. Data (qualitative) was analyzed and was used to develop a framework and guide the development of the “resource kit”. Two new AHS strategic initiatives involving patients were selected to pilot the kit. The kit will be evaluated for its impact on the patient engagement experience for patients, staff and leaders.

Simulating, studying and sustaining patient engagement in a forensic psychiatric hospital

Johann Brink, BC Forensic Psychiatric Hospital

This intervention established three teams to support and inspire transformative change both within the teams and across the organization. The Patients Empowered & Engaged as Researchers (P.E.E.R) Team, identified research priorities and methodologies and implemented a research project. Data collection was utilized to learn how treatment planning is perceived and experienced by patients and staff in a forensic psychiatric hospital.  The second team, a Patient Advisory Committee, has been established to ensure that the perspectives and opinions of patients become integral for decision-making and service provision within the hospital. The development of the third team, a Peer Support Program, has led to the hiring of a peer support worker to lead group and individual-based support groups. The peer support worker has, in turn, begun mentoring FPH patients on how to provide peer support.  To date, 46 patients have participated in group-based support and more than 80 patients have received one-on-one support. These services continue to evolve as challenges are encountered and as other patient/organizational needs are identified.

Your Voice Counts: Training patients to be effective in designing the system

Kelly McQuillen, BC Ministry of Health Services

This intervention seeks to improve patients’ preparation to participate in health system redesign in British Columbia through improved patient and provider communication in a multi-cultural context. Drawing on the principles of mutual learning, both patients and providers engage in face-to-face workshops and an on-line training pilot, aimed at providing the  skill- building necessary for collaborating in healthcare re-design. To accomplish this goal, the team has been required to:

  • design and test a process for public participation skill-building, both face-to-face and online;
  • work collaboratively with patients, family, caregivers, public, administrators and providers to design and develop appropriate training curricula and resources for patients in English, Punjabi and Chinese;
  • create a virtual forum for patients and decision-makers to build relationships through continuous communication using social networking technologies;
  • progressively involve patients in co-creating and refining health policies;
  • establish an evaluation framework for ongoing assessment and continuing quality improvement; and
  • articulate similarities and differences in the above populations and how to adapt to both their common and unique needs.

Engaging survivors to improve patient experiences throughout the cancer journey

Esther Green, Cancer Care Ontario

Fifteen cancer survivors representing nine regional cancer programs in Ontario formed the Patient and Family Advisory Council (PFAC) to advise on the long-term development of a patient experience measurement and improvement strategy and act as an internal expert forum. PFAC members were given an orientation package and participated in a two-day session to prepare them for their role as Council members. PFAC co-chairs met with staff to promote effective interaction with the Council and an iterative process has been developed to identify priority areas that will be used to set agenda items for Council meetings. Moreover, a toolkit was developed and shared with other organizations interested in engaging patients in advisory councils as a means to improve the patient experience with health services. Findings from the project were applied towards the development of a corporate policy on patient engagement as a means to improve the patient experience.

Bringing a recovery focus to schizophrenia services through client narratives

Kwame McKenzie, Centre for Addiction and Mental Health

This intervention aims to shift staff attitudes to promote a recovery-oriented, rather than custodial, perspective on care at the Centre for Addiction and Mental Health (CAMH). Through Peer Support Workers, 12 prospective speakers who have schizophrenia and have been hospitalized at CAMH one or more times in the past were identified. Ten speakers were trained to give talks to staff on the units, while nine felt prepared to share their stories and directly interact with staff about their life experiences within and outside of care. After apprising staff of the project, the speaker series was launched in three of the six inpatient units in the CAMH Schizophrenia Program, with talks taking place twice per month to facilitate the attendance of all shifts on each unit. The project evaluates changes in staff attitudes, ward programming and content of the service offered by units. Anticipating this strategy proves effective in altering clinician attitudes and practices, this would be one of the first studies to provide empirical evidence for such an approach.

Multifaceted parent-to-parent support program within a Family Support Network

Sandy Litman, Glenrose Rehabilitation Hospital, Alberta Health Services

Research has shown that family-to-family support programs can provide a unique and valuable source of emotional and practical support and often result in increase empowerment, reduction of stress and a greater sense of belonging. The purpose of this project is to develop a family-to-family support program for families who access services at the Glenrose Rehabilitation Hospital. The three primary objectives of the program are to: increase parental empowerment; increase social support; and improve parents’ knowledge of community services.

The team has conducted a review of the literature on family-to-family support programs, a survey of families who access services at the Glenrose, focus groups with families and an environmental scan of family-to-family support programs in Canada and the United States. As a result of the information collected, particularly from families, a support program has been designed. While implementation initially took place in Edmonton, the team continues to tailor the program for rural settings, while simultaneously conducting evaluations of outcomes for existing programs.

Patients and professionals partner to redesign inpatient care systems: Improving safety, access and work environment

Patricia O’Connor, McGill University Health Centre

Aligning with the two principal objectives of the organization’s Transforming Care at the Bedside (TCAB) initiative, the project aims to understand the inpatient experience through the eyes of patients and families; and to deeply engage patients and families, along with staff, in reshaping care processes that respond to patients’ and families’ real needs. The project team used a number of targeted strategies, including providing patients with opportunities to suggest improvements; improving communication with patients; training staff and patients on TCAB tools and patient engagement; and holding focus groups with staff to test new ideas, practices and procedures.

The results, both quantitative and qualitative, are highly promising. For example, the time needed to complete the inter-professional team admission process for inpatients has been reduced by a full hour. By relocating equipment and supplies, the time needed to prepare for procedures has been cut in half. Staff members report that these and other initiatives have increased work efficiency, improved communication and enriched teamwork and morale. The impact is just as profound for those receiving care. Surveys conducted with patients discharged from the pilot-test units show they believed staff was genuinely trying to listen and understand, and that interaction with staff has been improved significantly.

Patient input on developing early intervention mental health services

Robert Zipursky, St. Joseph’s Healthcare / McMaster University

It is crucial to engage patients in the early phases of illness so that they can minimize periods of active symptoms and adopt long-term strategies to manage their illness. The goal for St. Joseph’s Healthcare’s intervention is has been to solicit the preferences and opinions of consumers (using market research methods) about how to design an early-intervention (EI) mental health service to maximize the likelihood that patients will make initial contact, attend their first appointment and stay in the program. After increasing awareness of the project within the organization and community, the project team conducted surveys, focus groups and key informant interviews with patients, family members and staff to gain a richer understanding of how an EI service should be designed and to inform the development of further surveys. As of August 2011, the team was in the final stages of recruitment for subsequent surveys to help prioritize service design attributes that will make it more likely that individuals will agree to be assessed for their problems. By incorporating consumer input into service design, clearer understanding of client and family preferences with regard to EI services has been achieved, along with the realization that input into service design decreases rates of loss along the care continuum.

Patients are partners in improving experiences and outcomes of care at SMHC

Bruce Brown, St. Mary’s Hospital Centre

The PEP project at St. Mary’s Hospital Center has four components: building capacity among the Users’ Committee and other patient representatives to enable them to better represent patients in their work; developing navigational tools in three clinical program areas (emergency, mental health and cancer care); developing routine mechanisms to obtain data on patient experiences and hear their voices in decision-making about quality; and creating knowledge transfer and exchange activities within the full project team, across the hospital and throughout the wider external community. A baseline survey was conducted to determine the perceptions of the effectiveness, confidence and purpose of patient representatives. Users’ Committee members attended a training session provided by the Regroupement provincial de comités d’usagés du Québec, and members sought other training opportunities. Navigational tools were developed for the three clinical programs, with further feedback provided by patient focus groups. Evaluation and recommendations regarding routine measures and mechanisms, as well as planning for dissemination and scaling up have taken place to provide continuous impact on the quality of care and effectiveness of patient engagement.

Engaging patients and families to develop safety indicators

Gaétan Tardif, Toronto Rehabilitation Institute

The development of indicators that reflect what is important to patients and families and other stakeholders is important to identifying safer care within the Toronto Rehabilitation Institute.  This project engages patients and families in the development of a safety-measurement system that better reflects their needs, focuses on rehabilitation instead of acute care and sustains their engagement in resulting improvement initiatives. A preliminary safety performance-measurement framework, based on a literature review and an environmental scan, was refined and validated by patients, families, staff and administrators. Indicators that reflect patient/family consensus, as well as mechanisms to sustain patient engagement, was piloted over a six-month period to determine their utility and feasibility within the Institute. An evaluation of both the indicators and patient engagement in the project followed to offer assurance of sustained engagement in resulting improvement initiatives.

Research on patient engagement in health services funded in 2010

G. Ross Baker, University of Toronto, Ontario

The purpose of the accompanying research project is to determine lessons learned from the intervention projects and to document promising practices in Canada and around the world. The ultimate goal is to provide Canadian healthcare organizations with recommendations on effective ways to engage patients to improve the quality and delivery of care.

Health Council of Canada    Max Bell Foundation