Supporting patient engagement in health research: The Alberta Strategy for Patient-Oriented Research (SPOR)

IMAGINE Citizens Collaborating for Health’s vision is: “A health system that is designed, and care that is delivered, in partnership with citizens, achieving the best possible experiences and outcomes for patients.” One strategy for making progress on our vision is to ensure that more health and health services research is conducted that address priorities identified by citizens and patients, and to provide opportunities for more engagement throughout the research process.

As such, IMAGINE has developed a strong working relationship with the Alberta SPOR Patient Engagement (PE) Platform. The PE Platform is one of 7 platforms of the Alberta Strategy for Patient-Oriented Research (SPOR) Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit (shortened to AbSPORU.) The mission of the Patient Engagement Platform is to promote, support, and evaluate patient engagement in research thereby building capacity for the inclusion of the patient, family and/or caregiver voice in health research in Alberta.

The PE Platform Lead is Dr. Virginia Vandall-Walker, an Associate Professor with Athabasca University. Gail MacKean, a member of IMAGINE’s Citizen Steering Committee, has just stepped into the role of Patient Lead for the Platform, and is working closely with the PE Platform Lead and the other six Platform team members. IMAGINE also has a member sitting on the Patient Engagement Platform Advisory Council (PEPAC). This Council is comprised in equal numbers: a) patient/citizen members and b) researchers/health organization members who work to guide PE Platform activities in order to advance patient engagement in health research in Alberta.

The AbSPORU PE Platform recognizes that patients/citizens want to choose how they might be involved in research and what they want to be involved with, and researchers also might want some choice in how they engage patients in a research project. The PE Platform has adapted the often used IAP2 framework for public participation, to support choice and flexibility with respect to patient engagement in research.

Currently, the PE Platform is supporting a number of “demonstration projects” which are projects that test different strategies for engaging patients on research teams (one example is the Alberta Depression Research Priority Setting Project – see our next post). The PE Platform then evaluates these strategies, and will use what is learned to improve what they do.

The PE Platform offers a Registry for patients/citizens in Alberta interested in engaging in health research directly. The Registry is also for those that just want to be kept aware of what is happening in patient engagement in health research (e.g. research opportunities, education sessions/workshops for patient/citizens, etc.)

If you are a patient/citizen, health care professional, or researcher interested in learning more about SPOR, and Patient Engagement in research, and/or the PE Platform, you are welcome to connect with the PE Platform for more information. If you like what you see – let others in your network know!

AbSPORU Patient Engagement Platform
5-017 Edmonton Clinic Health Academy
11405 – 87 Avenue, Edmonton, Alberta
Phone: 780-492-9695

Facebook: SPOR Patient Engagement Platform