Building new roles and relationships in research: a model of patient engagement research.

Abstract

Patient engagement is influenced by institutional ideologies, professional attitudes and patient readiness to accept new, engaged roles. This article provides an opportunity to consider a new role for patients who are trained to conduct patient experience research using qualitative methods. The emergence of the role of patient engagement researcher was studied using a grounded theory with 21 patients over one-year internship and 125 research participants. Data were collected using tape recordings, field notes and student assignments. These were analyzed using open and selective coding, memoing, categorizing themes. Patients' education level (from high school to PhD), cultural background (immigrant experience, seniors), employment (employed full or part time, receiving disability benefits or retired), age (late 30 s-75) and gender (17 women and four men) were diverse. Main categories (emancipating patient experience; qualifying for research; leading sitting down; working data together; seeding change) are organized by the dialectic of co-creation as the roles of patient and researcher merge. A theoretical model is proposed. The theoretical model provides a glimpse into the process of merging two distinct roles of patient and researcher and in the process unleashes a force for change. The emergence of a dialectic from polar opposite roles is difficult to locate in health or other institutions where power differentials exist but there are indications that this new role might become a template for other merged roles in patient-led medical teams.