Public involvement across the UK’s research ecosystem at systems-level – results from the INTEGRATE study, a freedom of information-based survey

Funding bodies in many countries mandate patient and public involvement (PPI) in research study development and delivery. However, the extent of systems-level public involvement in strategic decision-making is unclear. We report a UK-based mixed-methods study using Freedom of Information requests to examine PPI within executive-level boards that set health research strategy across universities, funders and NHS organisations. Of the 402 institutions that responded, 19.4% had PPI representation at executive level and 23.4% had a PPI advisory structure. Findings suggest that: 1) Health research strategy-setting boards are highly variable 2) executive-level PPI is more common in NHS organisations than universities and funders 3) in universities especially, most PPI is at study-level rather than systems level 4) some institutions found ways to involve the public at systems level. In the UK, systems-level PPI is least developed where the most significant strategic and funding decisions regarding research are made.