1.0 Patient Engagement

Patient Engagement is the framework for all the activities of Diabetes Action Canada. The objectives, guiding principles and mechanisms developed for engaging patients in this SPOR Network have been approved by CIHR.

1.1 Objectives and Guiding Principles

The goals of the Patient Engagement Strategy are two-fold: i) to foster cultural change in patient-oriented research within our Network; and ii) to contribute to better quality research on diabetes and its related complications. More specifically, we will:

Create a community of people living with diabetes and their caregivers (hence referred to as patient partners) who will fully be involved as partners of the Network;
Build capacity for patient engagement in research on diabetes and its related complications in collaboration with the Training and Mentoring Group of the Network;
Ensure that patient partners are involved at every level (governance, tactical and operational) of the Network and in all phases of the research process (planning of studies, conducting the studies and disseminating the studies’ results); and,
Foster communication among researchers and those who use research findings, namely, patients, practitioners and decision-makers by creating a Researcher and Research-User Partnership Platform (RRUPP). The RRUPP will support those holding these different roles in connecting, interacting and collaborating with each other.

1.2 SPOR Guiding Principles and Outcomes

The principles underlying the Patient Engagement Strategy build on the SPOR Patient Engagement Framework. They were developed over several cycles with input from a variety of stakeholders including patient partners during the first two meetings of the Network.

The four principles are:

Inclusiveness: The perspectives of the most vulnerable Canadians—including recent immigrants, people living in poverty, Indigenous communities, people in remote and rural areas and women—are fully integrated.

Support: Adequate support is provided to patient partners to ensure not only their full participation but also their full impact on the process and outcomes of the Network.

Mutual Respect: Researchers, health care professionals and patients acknowledge and value each other’s expertise and ways of working.

Co-build: Patients, researchers and care providers work together from the start to identify problems and gaps, set research priorities and work together to produce and implement solutions.

1.3 Engagement of Patients in all phases of research

Planning the studies. Patients and caregivers have already been surveyed online about their concerns regarding diabetes and its related complications. Focus groups have been organized with groups unlikely to be reached by online surveys, including immigrants, the elderly and people with mental health problems in Quebec for this priority setting activity. Additional focus groups will be organized with recent immigrants, an Indigenous community in Winnipeg and women living in poverty in Toronto. These remaining focus groups will be conducted by our patient advisors. Moreover, we will establish a survey of Community-Based Primary Health Care stakeholders (see Knowledge Translation Work plan). In addition, patient partners will participate in defining the characteristics of study participants and refining the recruitment processes.

Conducting the studies. Patient partners will revise the protocols and participate in data analysis.
Disseminating the studies’ results. Patient partners will help identify relevant end-users of the results and participate in reporting the results.

1.4 Foster communication among researchers and those who use research findings

The Knowledge Translation and Patient Engagement Team will develop, iteratively and over time, and in consultation with all stakeholders, a Researcher and Research User Partnership Platform (RRUPP) to promote good communication and collaboration among researchers, patients, practitioners and decision-makers. This platform will allow engagement in all phases of research (from priority setting to the dissemination of the findings). In addition, we have begun a needs assessment to identify the type of platform needed and its features. We will also conduct a needs assessment with researchers. In parallel, we will conduct a realist review and consult with stakeholders of similar platforms. Patient partners who express an interest will participate as co-researchers in this review. For example, this could be facilitated through the use of an electronic platform hosting tools and resources (e.g., training modules) for researchers. The final format of the platform will be co-designed by the end of the second year (2018). Our core goal for the platform is to provide a single point of contact for researchers, patients, health care professionals, policymakers, and all interested stakeholders such that it facilitates truly collaborative, patient-oriented research.

While this plan is still under construction, we will ensure that researchers will have a single point of contact to discuss their needs with the Patient Council, enabling researchers within the Network to launch patient-oriented programs while the RRUPP is being co-constructed in partnership with patients and other stakeholders.