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

backgroundPatient 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.

aimsTo 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).

methodsCross sectional survey of corresponding authors of pragmatic RCTs published between January 1, 2014, and April 3, 2019.

resultsFrom 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.

conclusionA fifth of researchers reported including PPI partners as named 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. Patient and public involvement (PPI) in the design and conduct of clinical trials is encouraged or required in many cases. It is important to recognise PPI partners for their time and insight. Despite many guidelines being produced, we actually know very little about how researchers recognise and financially support PPI partners. To address this gap, we surveyed the authors of published clinical trials about their practices. Specifically, we asked researchers whether they had acknowledged their PPI partners or included them as co-authors, provided financial support for their time, or had covered expenses. From 2585 delivered invitations, a total of 710 researchers responded. Almost half (334/710, 47%) said they had involved PPI partners in their trial. A fifth of these researchers (59/300, 20%) reported that they included PPI partners as named co-authors. Just under half (132/300, 44%) reported that they had provided financial support for the time of their PPI partner. Almost two thirds (186/303, 61%) did cover expenses. Of those who completed all three questions almost a third (83/274, 30%) reported that all three options were provided to PPI partners. However, 40 (40/274, 15%) reported that they provided none of the options.