Recognition, remuneration and reimbursement of patient and public involvement partners in pragmatic randomised controlled trials. A survey of author practices

Background: Patient and public involvement (PPI) in the design and conduct of clinical trials has been increasingly encouraged by funders as an essential ingredient in the conduct of research. Recognition of PPI partners through acknowledgement or authorship, and financial supports, including remuneration and reimbursement, may facilitate involvement. However, little empirical data exists regarding current practices of recognising, remunerating and reimbursing PPI partners for their contributions to research. Aims: To describe the extent to which patient and public partners are recognised and remunerated for their involvement in a cohort of pragmatic randomised controlled trials (RCTs). Methods: Cross sectional survey of corresponding authors of pragmatic RCTs published between January 1, 2014, and April 3, 2019. Results: From 2585 delivered invitations, 710 responded, with 334 (47%) indicating that they had involved PPI partners within the trial. Among 300 respondents to questions about authorship, 59 (20%) reported PPI partners were included as named authors and 19 (6%) that PPI partners were included as part of a group authorship. Of 300 respondents to questions regarding remuneration, 132 (44%) indicated that PPI partners were provided some form of remuneration. Of the 303 respondents to questions about reimbursement, 186 (61%), indicated that PPI partners were reimbursed for expenses incurred. Of 274 respondents who completed all three questions regarding reimbursement, remuneration, and authorship or acknowledgment, 83 (30%) indicated that all three were provided to PPI partners, while 40 (15%) indicated that they provided none of the options. Conclusion: A fifth of researchers reported including PPI partners as co-authors, less than half provided remuneration, and over a third did not reimburse partners. There is a need to better understand the nature of any barriers that research teams and PPI partners face regarding recognition, reimbursement, and remuneration, and to develop targeted interventions that will address these barriers.