Sharing Knowledge: Investigating people’s experiences with patient and public involvement and engagement in a health research institution

Background and aims: The engagement and involvement of patients and the public in health research (PPIE) have gained attention evolving into different collaborative practices and traditions worldwide. In Denmark it has received attention from funders, in health policy, and research strategies in recent years, being described as a democratic value in health policy since 2014. Odense University Hospital (OUH) published a new research strategy in 2021, stating the goal of involving patients and relatives in all stages of the research process. While the strategy was being implemented across all hospital research units, this PhD project aimed to explore PPIE experiences, the underpinning values and principles, and how PPIE may be bound to local culture and context.  

Methods: The project was coproduced with six patient partners and includes three sub-studies. Study 1: Using the World Café method, the aim was to uncover existing principles and values from the literature and co-create a Code of Conduct for PPIE research with patients, relatives, and researchers. Study 2: This comprised a rapid literature review investigating roles, enablers, and impact in PPIE across various PPIE activities. Study 3: This was an institutional ethnography following the implementation of the OUH research strategy. It explored PPIE experiences of researchers, patients, and relatives, as well as knowledge organization, work activities, and institutional processes through observations, interviews, and document analysis.  

Results: Based on input from patients, relatives, and researchers at OUH, and literature on values and principles of PPIE, we created a Code of Conduct. We identified discrepancies between literature values and values endorsed by participants. In international PPIE literature, researchers are often described as decision-makers throughout the research cycle. However, when articles are co-authored by patients and relatives, they assume partnership roles particularly in design, analysis, and dissemination stages. Enablers include personality, communication skills, training for patients and relatives, trust, remuneration, and time. Our final study showed a strong institutional organization of researchers’ work aligned with the strategic outlines in the OUH strategy. PPIE was experienced as being meaningful when it helped fulfill research requirements, and patients and relatives accepted epistemic inferiority leading to PPIE activities which often validating established research aims and designs. Researchers and patients who engaged in PPIE before it was a strategic goal expressed democratic values and perceived the process to be meaningful while shaping institutional frameworks to accommodate PPIE. 

Conclusions: The project explores PPIE in conventional health research at a Danish research institution. While the literature and policy texts emphasize process and normative values in PPIE, our study highlights that researchers, patients, and relatives often describe substantive values related to research quality and effectiveness. Researchers are most often decision-makers in PPIE, establishing the collaborative activities according to established research processes. Societal trust in researchers’ abilities and status may hinder the perceived need for PPIE within the Danish health care system, which significantly shapes researchers’ identity, skills, and career orientation. To embed PPIE in Danish health research, attention should be directed to fostering equal, reciprocal partnerships and adapting institutional processes to incorporate diverse forms of knowledge.