Research Partnerships with Patients Living with Type 2 Diabetes: Practices and Challenges in Quebec Among People New to Canada

Abstract

Patients are increasingly encouraged to participate in health research programs as partners, with the aim to ensure that studies address their priorities. In response, the Strategy for Patient-Oriented Research (SPOR) has been created in Canada to transform the patient’s role in research from a passive beneficiary to a more proactive partner of change within the healthcare system. This research investigates what people new to Canada living with type 2 diabetes think about participating in research partnerships. Using an ethnographic approach, 31 people new to Canada with a diagnosis of type 2 diabetes were interviewed. Findings indicated that few people new to Canada were represented among the Diabetes Action Canada (DAC) Network’s Circles of Patient Partners in Quebec. Barriers to engagement in research were: lack of information; competing priorities; language barrier and privacy concerns; preconceptions about being a patient partner; prejudices on research engagement as something demanding and binding; and the matter of religious and gender differences. Some participants questioned the extent to which involvement in research can really meet their expectations considering institutional control over research, funding requirements that often dictate priorities and the biomedical approach which still, in many respects, dominates health research. Implications for achieving equity, diversity, and inclusion of patient partners in research are discussed.