Recognition, remuneration and reimbursement of patient and public involvement
partners in pragmatic randomised controlled trials A survey of author practices
#MMPMID41382181
Nicholls SG
; Nevins P
; Fox G
; Vanderhout S
; Brehaut J
; Carroll K
; Fergusson D
; Hilderley A
; MacArthur C
; Potter BK
; Smith M
; Spinewine A
; Weijer C
; Taljaard M
Res Involv Engagem
2025[Dec]; 11
(1
): 140
PMID41382181
show ga
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 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.
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