The rise of patient and public involvement in health research in Denmark – a qualitative study of funder's policies and practices

Patient and public involvement (PPI) aims to produce knowledge and improve health services by involving patients, citizens, and stakeholders in various processes, including research. Research funders are centrally positioned to influence how PPI is understood in a given context and legitimise how it is done. This article investigates the rationales used by research funders to encourage PPI in Danish health research, and the possible implications for how PPI is performed by health researchers. Building on Collyer’s (2018) conceptualisation of the healthcare sector as a field and her focus on the social action of central actors, we explore 1) the origin of research funders in Denmark, 2) funders rationales for encouraging PPI and 3) how research funders may shape PPI in Danish health research. A thematic analysis was performed based on interviews with 7 senior managers at seven research funding organisations in addition to strategic documents about PPI retrieved from these funders. We find that these rationales presented by research funders reflect predominantly technocratic rationales for PPI. Less emphasis was given to democratic justifications for PPI. Most funders supported PPI as part of their efforts to accumulate organisational legitimacy and credibility within the research infrastructure and among their members as patient organisations. Funders’ relationship with the wider healthcare and academic systems plays a part in determining their framing of PPI, and, that the cultural (re)production of PPI across national borders is highly likely to shape what PPI ‘is’ and ‘becomes’ in Denmark, requiring reflections to not repeat international experiences and critiques. • Funders define PPI in health research through a dominant technocratic rationale • Funders use the participatory agenda to acquire organizational legitimacy • There is less focus on democratic rationales underpinning PPI in health research • Danish funders import knowledge about PPI across national borders • Vague ideas about PPI can contribute to legitimising sub-optimal PPI approaches