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 2023, NLCAHR developed a new mechanism for working with patients and caregivers by partnering with the Patient and Caregiver Advisory Council of the Newfoundland and Labrador Support for People and Patient-Oriented Research and Trials Unit (NL SUPPORT).   Working with this group will provide CHRSP with access to a large and engaged council.  We have asked the members of our former CHRSP Patient and Caregiver Advisory Council to join the NL SUPPORT council, thereby creating a much larger pool of advisers.  In addition, we plan to continue to consult with the Research Exchange Groups as focus groups for any CHRSP studies that align with their interests. We are hopeful that by expanding our access to patient and caregiver consultants, CHRSP will develop a more robust process for input and feedback on our work.

Roles & Activities of the PCAC

CHRSP will work closely with the Council at NL-SUPPORT to ensure that membership roles are clearly outlined and are respectful of volunteers' needs as we do not wish to over-burden our patient partners.

All council members will receive orientation about CHRSP and NLCAHR's activities; conversely, the CHRSP team will take time to learn about council members' interests and perspectives.  When Council members are ready to contribute, we may invite them to consult with us on new projects or to recommend other patient/caregiver partners with whom we might consult.

In general terms, activitie may include any combination of the following:

• Participating in brief training sessions, as required
• Participating on specific project teams, either as a project team member or as a consultant on contextual issues.
• Reading research reports and providing your feedback, especially to help us develop more “user-friendly” language and formats for our reports.
• Attending and contributing to meetings at which we present our reports to the public.
• Working with CHRSP to prioritize research topics with a view to ensuring that a focus on patient journeys is central to our research.

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 to any patient and caregiver partners that seek to learn more.