Patients and caregivers play a crucial role in health research in Canada. ARC’s workbook is a practical tool that uses the Patient Engagement in Research (PEIR) framework as a foundation for developing high-quality partnerships between researchers and patients.
ARC studied the experiences and views of members of its Arthritis Patient Advisory Board to determine the key elements of a meaningful working relationship with researchers. The findings showed a lack of practical resources available to help guide the partnership. They also revealed a risk that, without proper direction, patients could feel their involvement is purely symbolic and not reflective of their rich experiences.
The PEIR framework includes the following eight components: procedural requirements, convenience, contributions, support, team interactions, research environment, feel valued and benefits. The workbook is divided into the same eight sections and asks questions to guide team discussion and generate dialogue on how each component will be addressed in the partnership. The workbook also encourages team members to identify key action items, establish roles and responsibilities and develop a work plan.
This workbook was created as part of a research project led by Clayon Hamilton, a post-doctoral fellow at ARC and the University of British Columbia, and co-researchers to develop metric to evaluate the quality of patient engagement in research.
– 30 –
ABOUT ARTHRITIS RESEARCH CANADA:
Arthritis Research Canada is the largest clinical arthritis research centre in North America. Our mission is to transform the lives of people living with arthritis through research and engagement. Led by world-renowned rheumatologist, Dr. John Esdaile, ARC’s scientific team of 70 are creating a future where people living with arthritis are empowered to triumph over pain and disability. Each of the three centres in BC, Alberta and Quebec are leading research in arthritis prevention, early diagnosis, treatment and quality of life issues.
For more information or to arrange an interview, please contact:
Marketing and Communications
Arthritis Research Canada
604-207-4010 or firstname.lastname@example.org