Patient Engagement Projects funded in 2010
Patient Engagement Projects funded in 2010
Through the Patient Engagement Initiative, CHSRF, 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.
As of August 2011, 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) has been analyzed and was used to develop a framework and guide the development of the “resource kit,” which will be completed by September 2011. Discussions have begun to determine the selection criteria for the project team to consider when choosing two new AHS strategic initiatives involving patients to pilot the kit. The kit will then 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
Three teams have been established in this intervention to support and inspire transformative change both within the teams and across the organization. Since March 2011, the first team, the Patients Empowered & Engaged as Researchers (P.E.E.R) Team, has identified research priorities and methodologies. Data collection will commence in October 2011 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 35 patients receiving group-based support and 60 patients receiving one-on-one support since March 2011. 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
The goal of this project is to improve patients’ preparation to participate in health system redesign in British Columbia. A minimum of 30 people will be trained in face-to-face workshops and 30 people will participate in an on-line training pilot. To accomplish this goal the team will:
- 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 will be 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 thus far have been applied towards the development of a corporate policy on patient engagement.
Bringing a recovery focus to schizophrenia services through client narratives
Kwame McKenzie, Centre for Addiction and Mental Health
This intervention is meant to have an impact on 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, and nine are prepared and feel confident 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 will evaluate changes in staff attitudes, ward programming and content of the service offered by units. Should this patient engagement strategy prove 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
Parents of children with disabilities can experience social isolation and psychological stress. Parents also must navigate through complex service delivery systems. 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.
To date, 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 program has been designed. While implementation will begin in Edmonton, the team will continue to develop plans for translation into rural settings. The final stage of the project will be an evaluation of the outcomes of the program.
Patients and professionals partner to redesign inpatient care systems: Improving safety, access and work environment
Patricia O’Connor, McGill University Health Centre
The objectives of this team’s PEP project are aligned with the two principal objectives of the organization’s Transforming Care at the Bedside (TCAB) initiative: 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.
After the first six months, the results, both quantitative and qualitative, were highly promising. For example, the time needed to complete the inter-professional team admission process for inpatients was reduced by a full hour. By relocating equipment and supplies, the time needed to prepare for procedures was 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. A survey conducted with patients discharged from the pilot-test units showed they believed staff was genuinely trying to listen and understand, and that interaction with staff had improved significantly.
The next phase of the project is to introduce a structured, modular approach for introducing the changes recommended in the first phase, which will result in improved care through the redesign of how units conduct admission and discharge preparations.
Patient input on developing early intervention mental health services
Robert Zipursky, St. Joseph’s Healthcare / McMaster University
This project aims 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. 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. 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.
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. To date, a baseline survey has been conducted to determine the perceptions of the effectiveness, confidence and purpose of patient representatives. User’s Committee members attended a training session provided by the Regroupement provincial de comités d’usagés du Québec, and are seeking other training opportunities. Navigational tools have been developed for the three clinical programs, pending further feedback from patient focus groups. Evaluation and recommendations regarding routine measures and mechanisms, as well as planning for end-of-project dissemination and scaling up, will follow.
Engaging patients and families to develop safety indicators
Gaétan Tardif, 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, will be refined and validated by patients, families, staff and administrators. Indicators that reflect patient/family consensus, as well as mechanisms to sustain patient engagement, will be piloted over a six-month period to determine their utility and feasibility within the Institute. An evaluation of both the indicators and patient engagement will follow.
Research on patient engagement in health services funded in 2011
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.
