The View From the Other Side of the Table: Being a Patient or Relative Involved in Health Research. An Institutional Ethnographic Approach

Participatory research practices are increasingly being initiated between patients, caregivers, and researchers in traditional health research. We focus on the integration of Patient and Public Involvement and Engagement (PPIE) in health research in a setting where PPIE has become a strategic aim and examine institutional structures through the experience of patients and relatives invited into PPIE activities. Despite the increasing emphasis on PPIE to enhance research quality and healthcare outcomes in Denmark and internationally, our findings show that PPIE is currently located on the fringes of the research process. Consequently, researchers who are constrained by existing institutional structures and processes decide how to make use of patients’ and relatives’ input. Patients and relatives often feel valued for their unique perspectives in certain parts of the research process, and being part of research gives them unique insights into the healthcare institution. However, the strong institutional context and translocal relations end up shaping their input rather than their input actually shaping research. Through institutional ethnographic methods and the coproduction of the study with patients and relatives, we highlight the complex interplay and negotiation of roles between institutional demands and the personal experiences of being a patient or relative in a research collaboration. By understanding the experience of patients and relatives invited into PPIE activities and how those experiences are influenced, the study shows the importance of how PPIE is implemented within current research institutions by attending to the people who are incorporating it into their praxis as well as to the institution context. The insights gained from this study prompt a reconsideration of roles and legitimate contribution, if PPIE is to truly make a difference in research collaborations.