CHRSP Patient & Caregiver Advisory Council
NLCAHR has a well- established partnership with the provincial health system. Working closely with key stakeholders from the four provincial Regional Health Authorities, the Department of Health and Community Services, and the Department of Children, Seniors and Social Development, we have developed an inclusive process to support evidence-informed decision making in health. We have now come to recognize that our research could be even more inclusive. CHRSP can be strengthened further by adding a critical dimension to our collaboration—the perspectives of patients and caregivers.
In consultation with our healthcare system, NLCAHR has developed a new Patient and Caregiver Advisory Council (PCAC) in recognition of the value that patients and caregivers will add to the CHRSP research process—as collaborators who can help our researcher and health system partners to develop a better understanding of the unique issues and concerns that face patients and caregivers in Newfoundland and Labrador. Members of PCAC will contribute to the CHRSP research process in a variety of ways.
The Composition of the Council
NLCAHR carried out a public outreach campaign in 2017 to recruit volunteers for the 2018-2019 CHRSP Patient and Caregiver Advisory Council (PCAC). We advertised and sent direct email to our contacts in the community; in response, we received applications from a wide variety of community members from across the province. Applicants for these volunteer positions were interviewed and the first 10-member PCAC was established in Fall 2017. Members were selected on the basis of having lived experience as a patient or caregiver, having an interest in research and in the use of research to support decision making, and having both the willingness and the time to respond in a timely manner to requests to review research materials and to offer feedback. Our 2018-2019 Council includes members who live within all four Regional Health Authorities and who will bring a diverse range of perspectives about health and healthcare from across Newfoundland and Labrador.
The 2018-2019 CHRSP Patient & Caregiver Advisory Council:
Judi Burgess | St. John’s | Eastern Health RHA
Brenda Critchley |Sandringham |Central Health RHA
Jon Dalton | St. John’s & Fogo Island |Eastern Health RHA
Edie Newton St. John’s | Eastern Health RHA
Paula Rolfe |Corner Brook |Western Health RHA
Ian Simpson |Corner Brook |Western Health RHA
Janet Skinner |Happy-Valley- Goose Bay | Labrador Grenfell Health RHA
David Tutton |Holyrood | Eastern Health RHA
Roles & Activities of the PCAC
Because both CHRSP and the Council will need time to get to learn from each other as a key part of this process, we will work with the Council to ensure that the process is respectful of your time and that we do not over-burden the membership. We plan to phase in the responsibilities of the PCAC members incrementally, over a two-year term.
Year One will involve mutual orientation and training (we will teach the PCAC about CHRSP and we will learn more about membership interests and perspectives) and a stepped approach to taking on roles in CHRSP studies, including having PCAC members review CHRSP reports as they are released. When the Council is ready to contribute, we will ask some members to consult with us on new projects or to recommend other patient/caregiver partners with whom we might consult.
In Year Two, we foresee building more PCAC involvement, including having the PCAC review and vote on topics submitted by the healthcare system. In following years, we foresee having the Council submit topics for possible study.
The details of what members can expect in each year of service on the Council are itemized in the handbook. In general terms, PCAC members will:
- Commit to a two-year term of service.
- Participate in two training sessions in Year One, including an orientation session on the CHRSP research process and a training session on topic selection.
- Participate in no more than one specific project team per year, either as a project team member or as a consultant on contextual issues.
- Be invited to read completed research reports and tell us what you think, most especially to help us develop more “user-friendly” language and formats for our reports.
- Be invited to meetings at which we present our reports to the public.
- Participate in two meetings in Year Two, including a topic selection meeting and a succession planning meeting.
- Work with CHRSP in Year 2 to identify and select research topics.
Support for the Council’s Activities
Members of the 2018-2019 Patient and Caregiver Advisory Council, were provided with an orientation session in March 2018 and with a Handbook and other tools, as required.
The CHRSP PCAC Coordinator is Sarah Mackey. She, and other members of the staff at NLCAHR, are available to support and to provide information and training, as members may require.