The BC SUPPORT Unit (the Unit) is a multi-partner organization currently in its start-up phase preparing to support, streamline and increase patient-oriented research in BC. We define patient-oriented research as research that engages patients as partners and focuses on patient-identified priorities with the goals of improving patient experiences, health outcomes and the health system overall. The Unit will have two main roles: providing services to researchers, patients, health care providers and health system decision makers, and facilitating initiatives identified as provincial priorities. The BC unit is one of several being established across the country as part of Canada’s Strategy for Patient-Oriented Research(SPOR) led by the Canadian Institutes of Health Research (CIHR).
Training for effective engagement under development
A training curriculum designed to develop the readiness of patients and other research project team members to meaningfully and actively collaborate in patient-oriented research is under development and expected to be available soon.
The process to develop this curriculum was spearheaded by the Strategic Initiatives Branch of CIHR and has resulted in the conceptualization of a course entitled Foundations in Patient-Oriented Research, with three modules: Module 1: Patient-Oriented Research; Module 2: Fundamentals of Health Research in Canada; and Module 3: Building Partnerships and Consolidating Teams. Colleen McGavin, BC SUPPORT Unit interim patient & stakeholder engagement lead, has been involved in the project from the start.
To begin the process, CIHR commissioned a comprehensive environmental scan of existing national and international models for preparing citizens and patients to be active partners in health research. A reference group consisting of citizens, patients, researchers, and others with relevant educational background was established to provide advice and input throughout the development process. A consensus-building workshop was held in March 2015 with a range of patient engagement experts, curriculum experts, patients and researchers to flesh out the broad learning objectives and the design principles.
Participants, many of whom, like McGavin, are affiliated with provincial SUPPORT Units, offered to lead the jurisdictional testing of the proposed modules with their stakeholder communities to validate their appropriateness and begin the process of creating learning materials and activities to build the curriculum. McGavin, who has 25 years of experience developing curriculum for adult learners, offered to do this for Module 1. Individuals from other jurisdictions, including Quebec and Alberta, are taking the lead on the development of the other two modules.
Four groups consisting of patients and researchers were hosted by Island Health earlier this month to solicit feedback on the planned learning activities and resources as a formative step in the development of the first module.
“Our overall impression was that the training materials were well-received, but it was a first try and we’re now focussed on analyzing all the feedback, including written submissions, so the curriculum can be honed before being offered to others,” said McGavin. “Results from efforts around the country will be reported back to CIHR and the Curriculum Reference Group in the late fall, and we’re very hopeful to have something to roll out in the new year.”
If you would like to know more about this project, please contact Colleen McGavin at email@example.com.
Patient-oriented research webinar
Patient-Oriented Health Research: How the Patient Perspective Makes a Difference
On September 30, a panel of three experts presented on the topic of patient-oriented research in an ImpactBC webinar. The panel included Colleen McGavin, interim patient & stakeholder engagement lead with the BC SUPPORT Unit and volunteer with Patients as Partners | Patient Voices Network; Rosa Venuta, project lead, citizen and patient engagement with the Canadian Institutes of Health Research; and Scott Lear, professor, Faculty of Health Sciences, Simon Fraser University.
- Collaborative research methodologies that allow for greater patient involvement
- Patient engagement guiding principles in patient-oriented research
- BC partnerships to support patient-oriented research
- The researcher perspective on the value of patient input into research
- The patient perspective of being involved as part of the research team
Over 200 people registered, including individuals from most BC universities as well as from Alberta and Ontario. One hundred people logged on to view the webinar live before the system reached its capacity and others needed to be turned away. A recording of the webinar was made and well over 200 people viewed it before the viewing period expired. According to staff at ImpactBC, interest in this topic is “huge.”
Connecting with stakeholders
Members of our Interim Operations Team continue to make presentations to various stakeholder groups interested in learning in person about SPOR and the development of the BC SUPPORT Unit. When you meet with us in person, we are able to hear your ideas about critical success factors for the Unit and how you might be able to get involved in the Unit’s regular operations as they roll out. To book a presentation, please see our Contact page.