Patient, researcher, and organizational representatives’ experiences conducting or supporting patient-initiated research

The British Columbia Support for People and Patient-Oriented Research and Trials (BC SUPPORT) Unit is a provincial initiative funded by the Canadian Institutes of Health Research within their Strategy for Patient-Oriented Research that aims to improve the health research landscape in Canada. The BC SUPPORT Unit has had a mandate to partner with patients and community members in its internal operations and support patient-oriented research in BC. As part of this, the Unit explored how it might better support patient-initiated research, a subset of patient-oriented research which empowers patients to assume leadership roles throughout the research process. The Unit launched a quality improvement project to explore the experiences of people who have conducted or supported patient-initiated research to inform how it could better support patient-initiated research arising within the Unit. In this report we provide an overview of a thematic analysis of experiences of various interest-holders involved in patient-initiated research. We identified factors specific to supporting patient-initiated research that the Unit should consider when helping connect patient partners with researchers to ensure successful team building. We conclude that patients who initiate research might require support in developing their research questions, conducting literature reviews, and connecting with research teams. This information can inform the Unit’s approach to supporting patient-initiated research.