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

Qual Life Res. 2015 May;24(5):1057-67. doi: 10.1007/s11136-014-0845-y. Epub 2014 Nov 7.


Purpose: 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.

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.

Results: 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.

Discussion: 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.

Conclusions: 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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Attitude
  • Biomedical Research
  • Data Collection*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Patient Participation*
  • Quality of Life
  • Research Design
  • Students