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 also come to recognize that our research 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 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 contribute to the CHRSP research process in a variety of ways.

The Composition of the Council

NLCAHR carries out ongoing outreach to recruit volunteers for the CHRSP Patient and Caregiver Advisory Council (PCAC). We advertise and send direct email to our contacts in the community and in response, we receive applications from a wide variety of community members from across the province. The first 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 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 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

Nancy Reid |  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

CHRSP works with the Council to ensure that membership roles are respectful of your time as we do not wish to over-burden the council. We phase in the responsibilities of the PCAC members incrementally, over time of service.

All council members receive orientation and training about CHRSP and NLCAHR's activities; conversely, the CHRSP team takes time to learn about council members' interests and perspectives.  Council members take a stepped approach to their roles in CHRSP studies, including the opportunity to review CHRSP reports as they are released. When Council members are ready to contribute, we ask them to consult with us on new projects or to recommend other patient/caregiver partners with whom we might consult.

In general terms, PCAC members:

  • Commit to a two-year term of service.
  • Participate in brief training sessions, as required
  • Participate in no more than one specific project team per year, either as a project team member or as a consultant on contextual issues.
  • Are 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.
  • Are invited to meetings at which we present our reports to the public.
  • Work with CHRSP to prioritize research topics.

Support for the Council’s Activities

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.