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

Recognition, remuneration and reimbursement of patient and public involvement partners in pragmatic randomised controlled trials. 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A survey of author practices Stuart G. Nicholls, Pascale Nevins, Grace Fox, Shelley Vanderhout, and 10 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6727717/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 11 Dec, 2025 Read the published version in Research Involvement and Engagement → Version 1 posted 12 You are reading this latest preprint version Abstract 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. Patient and public involvement compensation survey questionnaire ethics authorship acknowledgement reimbursement remuneration Figures Figure 1 PLAIN ENGLISH SUMMARY 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. A total of 710 researchers responded. Almost half (334, 47%) said they had involved PPI partners ion their trial. A fifth of these researchers reported that they included PPI partners as co-authors. Just under half (44%) reported that they had provided financial support for the time of their PPI partner. Over a third did not cover expenses. Of those who completed all three questions almost a third (30%) reported that all three options were provided to PPI partners. However, 40 (15%) reported that they provided none of the options. BACKGROUND Patient and public involvement (PPI) – in which there is active collaboration between researchers and patients or the public 1 , 2 – in the design and conduct of clinical trials enables research that is meaningful, relevant, and important to individuals with lived experience of an illness or condition. 3 Indeed, the impact of PPI on trial design and conduct is the subject of numerous reviews 4 – 8 and has been shown to improve trial recruitment. 7 There is increasing awareness of the need to better understand how PPI partners are recognised and financially supported for their contributions to academic research. 9 , 10 Recognition of PPI partners may include co-authorship or formal acknowledgement within manuscripts. Financial support may include remuneration, providing something of monetary value to someone in exchange for a service (e.g. honoraria or salary), 11 or reimbursement of expenses incurred (Table 1 ). Table 1 Definitions of key terms Term Definition Recognition Examples might include acknowledgement or co-authorship on manuscripts, or co-presenting research findings at a conference. Remuneration The provision of goods, services, or something of monetary value, in exchange for engagement. This may include offering payment or something of monetary value in exchange for their engagement. Examples might include honoraria, or a monetary amount based on contributed time or effort. 19 , 38 , 39 Reimbursement The repayment of out-of‐pocket expenses incurred. This may include travel, accommodation, parking, or child‐care support necessary to enable involvement in a research activity. 11 Table 1 . Definitions of key terms Remuneration and reimbursement may facilitate involvement by groups that face financial barriers to partnering in health research, thus enhancing equity, diversity, and inclusion regarding PPI in research. 9 , 10 In a Canadian survey of over 600 patient partners in health research and care, 12% reported receiving disability and/or income replacement benefits and 43% were retired. Notably, almost one quarter of respondents indicated costs associated with being a patient partner as a barrier to engagement. 12 Consequently, it has been argued that without remuneration PPI partners would largely consist of people who have the means to allocate unpaid time and energy towards research. Therefore, not offering remuneration may exclude potential PPI partners from equity deserving groups or communities. 12 A recent systematic review of health studies that specifically cited the Guidance for Reporting the Involvement of Patients and the Public (GRIPP) 13 or GRIPP2 14 reporting guidelines identified 316 studies that had actively engaged PPI partners. Of these, within 206 (65%) PPI partners were acknowledged within the manuscripts, 156 (49%) included a PPI partner as a co-author, and in 67 (21%) it was reported that PPI partners were provided reimbursement of expenses incurred. In addition,79 studies (25%) reported that remuneration was provided. 15 Other studies have reported the prevalence of patient or public authorship in child health research, 16 knowledge syntheses, 17 and health research more generally. 18 However, even with the social and ethical rationales, and multiple guidance documents, 11 , 19 – 21 there is a lack of research reporting on the recognition, remuneration or reimbursement of PPI partners in clinical trials. To address this gap, we surveyed corresponding authors - identified from a cohort of pragmatic randomised controlled trials (RCTs) published between 2014 and 2019 22 - to determine whether and how patient and public partners (PPI partners) were recognised, remunerated, and reimbursed. Specifically, we sought to answer the following questions: Among trialists that engaged PPI partners, what is the self-reported prevalence of: Recognition through authorship or acknowledgement of PPI partners in the manuscript? Remuneration for PPI partners? Reimbursement for out-of-pocket expenses incurred by PPI partners? Combinations of these forms of recognition, remuneration, and reimbursement? METHODS Sample and sampling frame As reported previously, 22 we surveyed corresponding authors of pragmatic RCTs published between January 1, 2014, and April 3, 2019. The RCTs were identified as part of a scoping review of health-focused trials that were deemed to be pragmatic in orientation. The review identified 4337 eligible trials, with most trials published in the USA, UK, and Australia. The details of the search strategy and full results of the scoping review have been published previously. 23 , 24 The survey was developed iteratively through discussion and written feedback by two PPI partners (AH, MS), trialists, and methodologists who support PPI. All team members were involved in developing the items along with wording and choice options. Our PPI partners provided insights into items and aspects of recognition, remuneration, and reimbursement that were important and relevant to PPI partners, as well as informing the choice options included within survey questions. Subsequently we surveyed corresponding authors of these trials to better understand PPI practices. As reported elsewhere, 22 we identified corresponding authors in the following countries: Canada, United States, United Kingdom, Australia and New Zealand, South Africa, France, Belgium, Denmark, Finland, Germany, Italy, the Netherlands, Norway, Spain, Sweden and Switzerland, which yielded 3501 eligible trials. As individuals could potentially be the corresponding author for multiple reports, we selected only the most recently published report. This provided a sampling frame of 3163 unique corresponding authors. Where the corresponding authors had no email addresses listed, we used online searches to identify an email address. Data collection The survey was administered using the SurveyMonkey online platform. The survey consisted of 27 open- and closed-ended items relating to PPI in the published trial. The survey included a definition of PPI and respondents were asked to indicate that they had read and understood the definition prior to completing the survey. A copy of the full survey is included as a Supplementary File S1. The survey was piloted with a random sample of 100 corresponding authors. No substantive changes were made, and pilot data were included in the final analysis. Invitation emails sent to the corresponding authors included information about the trial for which they were being approached as well as a unique link which allowed for survey responses to be linked to trial characteristics already collected as part of the previous scoping review. All participants were prompted to review a participant information sheet at the start of the survey and were advised that completing the survey was voluntary and doing so provided implied consent to participate. Survey participants were given the option to be entered into a draw for one of five $ 100 CAD Amazon gift cards. Email invitations were sent on February 8, 2022, followed by up to three reminders. The survey was closed on April 5, 2022. This paper focuses on the survey questions that pertained to PPI partner recognition (authorship or acknowledgment), remuneration, or reimbursement. Specifically, survey respondents who reported that PPI partners were involved in the trial were asked: Were PPI partners acknowledged in the manuscript or elsewhere? Response options: Named as co-author(s); Included in group authorship (e.g., "on behalf of..."); Named in acknowledgements section; Not applicable: Patient/public partners elected not to be acknowledged; Other (please specify); None of the above) Were PPI partners remunerated beyond expenses? Response options: Yes; No; Don’t know (please explain) Were PPI partners reimbursed for expenses incurred? Response options: Yes, always; Yes, sometimes; No; Don’t know; Not applicable – no expenses were incurred by patient and public partners; Other (please specify) This study was approved by the Ottawa Health Science Network Research Ethics Board (Reference number: 20210684-01H). In addition, both PPI partners reviewed the main study protocol and provided feedback on the process and survey content. Both patient partners have reviewed the present manuscript and provided critical feedback. The study is reported in accordance with the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) and the GRIPP2-SF. Data curation and analysis Survey data were exported from SurveyMonkey into a spreadsheet using Airtable. 25 Participant characteristics and responses about PPI were summarised using descriptive statistics (frequencies and percentages). All survey responses were analysed regardless of completeness. Most survey items were closed-ended, but many allowed respondents to select “Other” and elaborate in a text box. When the ‘Other’ category was selected, the open text provided was independently reviewed by two members of the team and coded using a thematic analysis approach. 26 The team members subsequently met to discuss coding and come to consensus on the coding scheme. Disagreements were resolved by discussion. Based on the open text responses to the ‘Other’ category we created two additional categories for the question about recognition (question 1 above): ‘Acknowledged in the body of the manuscript’ and ‘Co-authors on/ acknowledged in ancillary research material’ as well as a category of ‘Unsure or unclear’. In addition, we explored how many respondents had indicated combinations of each support (recognition -authorship or acknowledgement, remuneration, or reimbursement). To facilitate this analysis, we dichotomised responses to yes versus any other response for all three questions (with yes referring to authorship, acknowledgement or both for the question about recognition), thus creating eight permutations. RESULTS A total of 3163 unique corresponding authors were invited to complete the survey. Of these, 508 emails were undeliverable and 70 did not receive emails as they had opted out of being contacted by SurveyMonkey. Of the delivered invitations, 710/2585 (27%) responded, with 334/710 (47%) indicating that they had engaged with PPI partners within the trial. Demographic characteristics of respondents who had engaged with PPI partners are shown in Table 2 , with a breakdown by year of trial publication in the Supplementary Table. In the remainder of the paper, we focus on the responses from these 334 individuals. Table 2 Respondent characteristics (N = 334), * Multiple selections allowed. Item N (valid %) Trial population (self-report) Children ( 65 years) only Neither of the above 71 (21.3%) 46 (13.8%) 217 (65%) Region of Residence* USA UK Non-UK Europe Australia or New Zealand Canada Other Missing 103 (35.8%) 81 (28.1%) 62 (21.5%) 35 (12.2%) 13 (4.5%) 6 (2.1%) 46 Gender Male Female Prefer not to disclose or missing 114 (39.7%) 173 (60.3%) 47 Age 25–35 years 36–45 years 46–55 years 56–65 years > 65 years Missing 6 (2.0%) 49 (16.7%) 84 (28.6%) 94 (32.0%) 61 (20.7%) 40 Racial or ethnic group* White South Asian (Indian, Pakistani, Sri Lankan) Chinese Black Latin American/Hispanic Arab West Asian (Iranian, Afghan) Korean Japanese Other (specified text) Prefer not to disclose or missing 256 (89.5%) 13 (4.5%) 3 (1.0%) 6 (2.1%) 4 (1.4%) 1 (0.3%) 1 (0.3%) 1 (0.3%) 1 (0.3%) 2 (0.7%) 48 Stage of research career Early career researcher (within 5 years of first academic appointment) Mid-career researcher (6–15 years since first academic appointment) Late career researcher (> 15 years since first academic appointment) Retired or Professor Emeritus Other (e.g., no academic appointment) Missing 13 (4.4%) 67 (22.7%) 203 (68.8%) 8 (2.7%) 4 (1.4%) 39 Reported years of PPI experience 1–3 years 4–10 years > 10 years Missing 12 (4.1%) 95 (32.1%) 189 (63.9%) 38 Table 2 . Respondent characteristics Most participants identified as female (173, 60%), white (256, 90%) and late career researchers (203, 69%). The highest proportions of respondents were based in the USA (103, 36%) or UK (81, 28%). Respondents were largely experienced with PPI, with 189 (64%) indicating they had over 10 years PPI experience. The number of respondents increased by year (Supplementary Table). Recognition through authorship or acknowledgement Three hundred respondents completed the question regarding PPI recognition through acknowledgement or co-authorship. Of these, 194 respondents indicated some form of authorship or acknowledgment in the manuscript or within other materials (65%). In over a quarter of responses, patient and public partners were reported as being included as authors, either as individual authors (59, 20%) or as part of a group authorship (19, 6%). However, the most common form of recognition was acknowledgement of PPI partners in a specific acknowledgement section (154, 51%), although acknowledgment in the main body of the text (9, 3%) or in other publications or material (5, 2%) was also noted. Acknowledgements were reported to vary, with some naming PPI partners while others reported acknowledgement was to a generic group or as a general thanks to PPI partners. In 35 responses (12%), it was indicated that patient and public partners elected not to be acknowledged. However, 70 respondents (23%) indicated that PPI partners were not acknowledged or listed as co-authors (Table 3 ). We did not see any indication of a trend over time (see Supplementary Figure) Table 3 Details of recognition, remuneration, and reimbursement. ¥ does not sum to 100% as multiple selections possible. § indicates categories developed post-hoc upon review of open responses in ‘other’ category. Item Frequency (valid %) How were PPI partners acknowledged in the manuscript or other materials? ¥ Named as individual co-authors 59 (20%) Included in group authorship 19 (6%) Named in the acknowledgement section 154 (51%) Acknowledged in the body of the manuscript § 9 (3%) Co-authors on/ acknowledged in ancillary research material § 5 (2%) Not applicable: patient or public partners elected not to be acknowledged 35 (12%) Unsure or unclear 5 (2%) None of the above 70 (23%) No answer/missing 34 Were PPI partners remunerated (e.g., cash, vouchers, honoraria) for their involvement? Yes 132 (44%) No 158 (53%) I don’t know/Unclear 10 (3) No answer/missing 34 Were PPI partners reimbursed for out-of-pocket expenses related to their involvement Yes (i.e., always, sometimes) 186 (61%) No 73 (24%) Not applicable (i.e., no expenses were incurred by patient and public partners) 35 (12%) I don’t know 9 (3%) No answer/missing 31 Remuneration of PPI partners Three hundred respondents completed the question regarding the remuneration of PPI partners. Of these, 132 respondents (44%) indicated that they provided some form of remuneration (e.g., cash salary, vouchers, honoraria). Some respondents provided additional comments using the option of ‘Don’t know (please explain)’ and noted that there could be varied remuneration within studies, with some PPI partners remunerated while others were not. For example, representatives of community organisations may be remunerated but partners representing a school may not. Again, we did not see any indication of a change in practice over time (see Supplementary Figure) PPI partner reimbursement A total of 303 respondents completed the question regarding reimbursement. Most of these respondents (186, 61%) indicated that PPI partners were reimbursed for expenses incurred, although almost one quarter (73, 24%) indicated that they were not. Thirty-five respondents (12%) indicated that no expenses were incurred by PPI partners, while 9 (3%) were unsure if PPI partners were reimbursed for expenses. While we did not require an explanation to why PPI partners were not reimbursed, some respondents indicated that they had not provided explicit reimbursement as the PPI partners had received an honorarium, which was expected to cover minimal costs that were incurred. Some respondents used the ‘Other’ category to provide additional details, with examples of reimbursed costs including travel expenses (including parking), or meals. Once more, we did not see any indication of a change in practice over time (see Supplementary Figure). Table 3 . Details of recognition, remuneration, and reimbursement. Combination of practices Of 274 respondents who completed all three questions regarding recognition, remuneration and reimbursement (excluding those whose responses were “I don’t know”), 83 (30%) indicated that all three were provided to PPI partners, while 41 (15%) indicated that they did not provide recognition (authorship or acknowledgement), remuneration, nor reimbursement. A similar number (40, 15%) provided only recognition without any remuneration or reimbursement, while 57 (21%) provided some form of remuneration or reimbursement but no recognition. A full breakdown of the percentage of respondents for each combination is presented in Fig. 1 . DISCUSSION Among a cohort of survey respondents who had engaged patients or the public within a published pragmatic trial, less than half reported providing remuneration to PPI partners, and just over half reported reimbursing PPI partners for out-of-pocket expenses related to their involvement. PPI partners were commonly recognised through acknowledgement in publications, with a substantial minority named as co-authors. Almost a third of respondents completing all three questions indicated that they recognised PPI partners through acknowledgement or authorship, provided remuneration, and reimbursed PPI partners. A strength of our study is that the data were obtained from a survey of corresponding authors as opposed to relying on extracting information from publications. The reporting of remuneration and reimbursement is not a requirement of either GRIPP2 or Consolidated Standards of Reporting Trials (CONSORT) 27 reporting guidelines and, as a consequence, there may be underreporting of remuneration and reimbursement within academic articles. Similarly, there remain challenges to identifying patient authors of manuscripts. 28 – 30 The self-report nature of our survey removes any interpretation challenges. Finally, our analysis extends the current literature insofar as we also examined combinations of recognition practices, identifying a cohort of respondents who provided no form of remuneration, reimbursement or recognition for PPI partners. The results must, however, be reviewed in light of the study limitations. First, the response rate was low at 27%. While this may not be unexpected given the unsolicited nature of the survey and relatively long window of time for included trials, it has implications with respect to risks of non-response bias. We may have expected a larger proportion of respondents to not have provided any form of recognition, remuneration, or reimbursement, but with a change over time as policies were adopted by funders, especially given that over half of respondents were from the USA and UK and where funders and government agencies support PPI. As such, we must caution as to the generalisability of these findings to the broader population of trialists. Indeed, it is possible that authors more familiar with, or supportive of PPI and associated practices were more likely to respond to the survey request, thus, yielding an over-estimate of the prevalence of any form of recognition, remuneration, or reimbursement. A second limitation is the earlier publication date of some of the included trials: at the time of the survey, it had been almost 10 years since the publication of the earliest trials in the underlying cohort. While we did have a greater proportion of respondents with more recently published trials, the time that had passed since the completion of some trials may have influenced recall. Future research would benefit from a more contemporary sample which may address limitations of recall error and provide updated data regarding the recognition, remuneration and reimbursement of patient partners in RCTs. A final limitation is our decision to dichotomise the responses for our analysis of combined practices. While we excluded those who indicated a response of ‘Don’t know’ it did include cases where expenses were not incurred and thus not reimbursed. As no expenses were reported to be incurred, we do not know whether these respondents would have reimbursed patient partners had they been incurred and as such the combined categories may overestimate the proportion of respondents who would not reimburse in combination with other forms of recognition or remuneration. Our results do, however, offer new insights into how PPI partners are financially supported and recognised. Less than a fifth of respondents indicated that PPI partners were a named co-author, lower than previous studies which reported a prevalence of almost 50% co-authorship. 15, 31 However, both of those reviews targeted PPI as the topic of interest or had a sampling frame that required reference of the GRIPP 13 or GRIPP2 14 reporting guidelines, and may represent best case scenarios with respect to implementing or reporting aspects of PPI. While we did not see a trend over time, Vanderhout et al. , did find an increasing prevalence of PPI partner authors and/or acknowledged patient partners over time. 16 Indeed, our results are closer to those of a review of PPI in cancer research which found that a third of the included studies had patients as co-authors. 32 This may point to variation between study designs or areas of research and would merit future study. In addition, twelve percent of respondents in our survey indicated that PPI partners declined to be acknowledged. While PPI partners wish to feel valued for their contributions to research, 33 there is a lack of research regarding the value that PPI partners place on traditionally academic forms of recognition such as authorship. More work is needed to understand the value that is placed in authorship or acknowledgement by PPI partners, but also the potential barriers to PPI partner authorship and acknowledgement. In the interim, PPI partners have written guidance for researchers and how the International Committee of Medical Journal Editors’ (ICMJE) guidance can be interpreted for patient co-authors. 34 Our survey indicates a much higher prevalence of remuneration than has been previously reported, 15 , 32 with 44% of respondents indicating that PPI partners were financially compensated. However, as stated above, reporting of remuneration is not a requirement of any guidelines and as such there may be underreporting of costs and remuneration in publications as compared to our self-report data. To date there are few other studies to compare with and more empirical research exploring actual practices, together with the barriers and facilitators to providing remuneration, are needed. One surprising finding from our survey related to reimbursement for out-of-pocket expenses, with over a fifth of respondents indicating that PPI partners were not reimbursed for expenses incurred through their involvement. This stands in stark contrast to a recent scoping review which identified 67 international guidance and policy documents, all of which recommended reimbursing patient partners for any expenses associated with engagement. 35 We strongly suggest that researchers proactively consider the costs that may accrue to PPI partners and build these into their study budget to ensure that PPI partners are not left out of pocket for their involvement in research. 20 , 36 , 37 Finally, we found that 15% of respondents who answered all three questions regarding recognition, remuneration, and reimbursement, indicated that none of the practices were implemented. While the approaches implemented may be determined by the extent to which expenses were incurred, availability of funding, and even whether PPI partners wish to be acknowledged, it is surprising that such a high proportion provided none of the recognition options. While studies have begun to explore the ways in which PPI partners are being remunerated or recognised in publications, we have not been able to identify other research that has examined the combination of recognition, remuneration and reimbursement and which may indicate whether particular practices are being adopted in lieu of others. Conclusions In conclusion, our results indicate that researchers report that less than a fifth of PPI partners were recognised as co-authors, a substantial minority are provided remuneration, and the majority are reimbursed. It is important that we ensure that PPI partners are not being left out-of-pocket for their involvement in research and which creates barriers to participation. There is also a need to better understand the nature of any barriers that research teams and PPI partners face regarding recognition, remuneration, and reimbursement, and to examine these in a holistic manner, in order to develop targeted interventions that will address these barriers. Declarations Ethics approval and consent to participate This study was approved by the Ottawa Health Science Network Research Ethics Board (Reference number: 20210684-01H). All participants provided an implied consent by completing the survey. Consent for publication All authors have reviewed the manuscript and consent to publication. Availability of data and materials The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. Competing interests Charles Weijer reports receiving consulting fees from Eli Lilly & Company. Anne Spinewine reports receiving a Mobility Grant from Fondation Mont-Godinne. No other competing interests were declared. Funding This work was supported by the Canadian Institutes of Health Research through the Project Grant competition (competitive, peer reviewed), award number PJT-153045. The funder had no role in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication. Authors' contributions MT, CW and JB acquired funding for the study. MT, SN and SV contributed to the conception and design of the work. AH, MS, PN, SV, MT, SN and KC contributed to the acquisition of data. PN, MT, SN and SV contributed to the analysis and interpretation of data. SN wrote the initial version of the manuscript. All of the authors revised the manuscript critically for important intellectual content, gave final approval of the version to be published and agreed to be accountable for all aspects of the work. Acknowledgements The authors acknowledge Drs. 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BMJ Open. 2018;8:e020452. 10.1136/bmjopen-2017-020452 . SPOR Networks in Chronic. Diseases and the PICHI Network. Recommendations on patient engagement compensation . 2018. National Institute of Health and Care Research. Payment guidance for researchers and professionals, https://www.nihr.ac.uk/documents/payment-guidance-for-researchers-and-professionals/27392 (2022, accessed 24 november 2023). Fox G. Recognizing patient partner contributions to health research. Ottawa, ontario: University of Ottawa; 2022. Vanderhout S, Nevins P, Nicholls SG, et al. Patient and public involvement in pragmatic trials: online survey of corresponding authors of published trials. CMAJ Open. 2023;11:E826–37. 10.9778/cmajo.20220198 . Nicholls SG, Carroll K, Hey SP, et al. A review of pragmatic trials found a high degree of diversity in design and scope, deficiencies in reporting and trial registry data, and poor indexing. J Clin Epidemiol. 2021;137:45–57. 10.1016/j.jclinepi.2021.03.021 . Taljaard M, McDonald S, Nicholls SG, et al. A search filter to identify pragmatic trials in MEDLINE was highly specific but lacked sensitivity. J Clin Epidemiol. 2020;124:75–84. Airtable. https://airtable.com/product (2020). Braun V, Clarke V, Hayfield N et al. Thematic Analysis. In: Liamputtong P, editor Handbook of Research Methods in Health Social Sciences . 2019, pp.843–860. Moher D, Hopewell S, Schulz KF, et al. CONSORT 2010 explanation and elaboration: updated guidelines for reporting parallel group randomised trials. BMJ. 2010;340:c869. 10.1136/bmj.c869 . Lynch E, Earle-Bandaralage L, Eley S, et al. Credit where it’s due: Recognising lived experience in research authorship. Patient Educ Couns. 2024. 10.1016/j.pec.2024.108472 . Oliver J, Lobban D, Dormer L, et al. Hidden in plain sight? Identifying patient-authored publications. Res Involv Engagem. 2022;8:12. 10.1186/s40900-022-00346-w . Woolley KL, Stones SR, Stephens R, et al. Patient authorship of medical research publications: An evolution, revolution, and solution? Learn Publish. 2024. 10.1002/leap.1607 . Karlsson AW, Kragh-Sorensen A, Borgesen K, et al. Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research. Res Involv Engagem. 2023;9:43. 10.1186/s40900-023-00448-z . Colomer-Lahiguera S, Steimer M, Ellis U, et al. Patient and public involvement in cancer research: A scoping review. Cancer Med. 2023;12:15530–43. 10.1002/cam4.6200 . Anderson AM, Brading L, Swaithes L, et al. Building trust and inclusion with under-served groups: a public involvement project employing a knowledge mobilisation approach. Res Involv Engagem. 2024;10. 10.1186/s40900-024-00647-2 . Richards DP, Birnie KA, Eubanks K, et al. Guidance on authorship with and acknowledgement of patient partners in patient-oriented research. Res Involv Engagem. 2020;6:38. 10.1186/s40900-020-00213-6 . Fox G, Fergusson DA, Sadeknury A, et al. What guidance exists to support patient partner compensation practices? A scoping review of available policies and guidelines. Health Expect. 2024;27. 10.1111/hex.13970 . NIHR Involve. Involvement Cost Calculator. https://www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/involvement-cost-calculator/#1 (2019, accessed 8 May 2024). Centre for Healthcare Innovation. CHI patient and public engagement budget builder, https://umanitoba.ca/centre-for-healthcare-innovation/sites/centre-for-healthcare-innovation/files/2023-06/2020-01-29-chi-pe-budget-tool-v2-8-3.xlsx (2020, accessed 8 May 2024). Greer AM, Buxton J. ,.A. and In partnership with the Paying Peers Working Group. A guide for paying peer research assistants.Challenges and Opportunities. British Columbia: BC Centre for Disease Control; 2016. Fox G, Fergusson DA, Nicholls SG, et al. Recognizing patient partner contributions to health research: a mixed methods research protocol. Res Involv Engagem. 2022;8:24. 10.1186/s40900-022-00354-w . Additional Declarations Competing interest reported. Charles Weijer reports receiving consulting fees from Eli Lilly & Company. Anne Spinewine reports receiving a Mobility Grant from Fondation Mont-Godinne. No other competing interests were declared. 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As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6727717","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":463731347,"identity":"3ba854d1-849e-4f04-86bb-171cab4b7be9","order_by":0,"name":"Stuart G. Nicholls","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAv0lEQVRIie3PsQqCUBTG8S8EW260XjE8r3BdosGH0UWXBkfHG4K9gtJT9AZG4HQfQKglfATXhgydIri2Ndz/fH7wHcBk+ssW0gJ2GyylDYj5hDOwejYBRsJDe945nfJDn2acUdU1XZaC1lJDxP2Su6XiTNzixFcCflnrCI8Ka1UMxN1vHSkQQkeonAhVaiSkI2gngpaNRGiHtVHusvcvKo4Hwv2zfljy6FkWeHS8No58BuRph33Ef7w3mUwm09deiaI1tYavi8MAAAAASUVORK5CYII=","orcid":"","institution":"Ottawa Hospital Research Institute","correspondingAuthor":true,"prefix":"","firstName":"Stuart","middleName":"G.","lastName":"Nicholls","suffix":""},{"id":463731348,"identity":"1b5bb579-300a-453e-a30d-79b3bdfdfd3c","order_by":1,"name":"Pascale Nevins","email":"","orcid":"","institution":"Ottawa Hospital Research Institute","correspondingAuthor":false,"prefix":"","firstName":"Pascale","middleName":"","lastName":"Nevins","suffix":""},{"id":463731349,"identity":"8c5d497c-a95a-4074-8c9d-8cd6c8e7f72a","order_by":2,"name":"Grace 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Institute","correspondingAuthor":false,"prefix":"","firstName":"Kelly","middleName":"","lastName":"Carroll","suffix":""},{"id":463731353,"identity":"bcfa92b6-b024-4cb2-ae13-26b2cfcee938","order_by":6,"name":"Dean Fergusson","email":"","orcid":"","institution":"Ottawa Hospital Research Institute","correspondingAuthor":false,"prefix":"","firstName":"Dean","middleName":"","lastName":"Fergusson","suffix":""},{"id":463731354,"identity":"5cf96231-a41a-4293-9590-fd2f2816e59e","order_by":7,"name":"Alicia Hilderley","email":"","orcid":"","institution":"The Ottawa Hospital","correspondingAuthor":false,"prefix":"","firstName":"Alicia","middleName":"","lastName":"Hilderley","suffix":""},{"id":463731355,"identity":"cfcbb4d1-3644-42f2-a5af-7f6d50a016eb","order_by":8,"name":"Colin MacArthur","email":"","orcid":"","institution":"Hospital for Sick Children Research Institute","correspondingAuthor":false,"prefix":"","firstName":"Colin","middleName":"","lastName":"MacArthur","suffix":""},{"id":463731356,"identity":"19f25d67-9948-4da3-afd5-48a19f3afb1f","order_by":9,"name":"Beth K Potter","email":"","orcid":"","institution":"University of Ottawa","correspondingAuthor":false,"prefix":"","firstName":"Beth","middleName":"K","lastName":"Potter","suffix":""},{"id":463731357,"identity":"334f2020-336b-46dd-ba64-034b85a584d2","order_by":10,"name":"Maureen Smith","email":"","orcid":"","institution":"Patient Partner","correspondingAuthor":false,"prefix":"","firstName":"Maureen","middleName":"","lastName":"Smith","suffix":""},{"id":463731358,"identity":"669328e4-958a-4df1-b82e-1b996a38283b","order_by":11,"name":"Anne Spinewine","email":"","orcid":"","institution":"Louvain Drug Research Institute UCLouvain","correspondingAuthor":false,"prefix":"","firstName":"Anne","middleName":"","lastName":"Spinewine","suffix":""},{"id":463731359,"identity":"85792779-4598-49e7-a510-d7497dd493d6","order_by":12,"name":"Charles Weijer","email":"","orcid":"","institution":"Western University","correspondingAuthor":false,"prefix":"","firstName":"Charles","middleName":"","lastName":"Weijer","suffix":""},{"id":463731360,"identity":"9042d311-662e-4fd4-97c2-c9ed93276954","order_by":13,"name":"Monica Taljaard","email":"","orcid":"","institution":"Ottawa Hospital Research Institute","correspondingAuthor":false,"prefix":"","firstName":"Monica","middleName":"","lastName":"Taljaard","suffix":""}],"badges":[],"createdAt":"2025-05-22 20:23:09","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6727717/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6727717/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s40900-025-00796-y","type":"published","date":"2025-12-11T15:57:30+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":83751921,"identity":"b60c4ae3-5af1-4ae2-af23-c7a6f573782c","added_by":"auto","created_at":"2025-06-02 07:09:20","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":256333,"visible":true,"origin":"","legend":"\u003cp\u003eReported percentages of recognition, remuneration, reimbursement and combinations of these\u003c/p\u003e","description":"","filename":"Picture1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6727717/v1/226b4686f685b40f21838d38.jpg"},{"id":98244737,"identity":"66f0cec0-9821-4c24-95c3-78201e60543f","added_by":"auto","created_at":"2025-12-15 16:14:52","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1139404,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6727717/v1/c38e5e01-8d3c-4204-9761-63e845f0c2b7.pdf"},{"id":83751926,"identity":"740d3feb-4fd8-4384-b218-4ff401576138","added_by":"auto","created_at":"2025-06-02 07:09:21","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":20455,"visible":true,"origin":"","legend":"","description":"","filename":"GRIPP2SFNicholls.docx","url":"https://assets-eu.researchsquare.com/files/rs-6727717/v1/b77bd394a2fd0336fc44f582.docx"},{"id":83751924,"identity":"d203df1a-12c6-4870-a29d-0db6ace9e97f","added_by":"auto","created_at":"2025-06-02 07:09:21","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":35128,"visible":true,"origin":"","legend":"","description":"","filename":"CHERRIESChecklistNicholls.docx","url":"https://assets-eu.researchsquare.com/files/rs-6727717/v1/4fc2a50f8c6b552c1a80888d.docx"}],"financialInterests":"Competing interest reported. Charles Weijer reports receiving consulting fees from Eli Lilly \u0026 Company. Anne Spinewine reports receiving a Mobility Grant from Fondation Mont-Godinne. No other competing interests were declared.","formattedTitle":"Recognition, remuneration and reimbursement of patient and public involvement partners in pragmatic randomised controlled trials. A survey of author practices","fulltext":[{"header":"PLAIN ENGLISH SUMMARY","content":"\u003cp\u003ePatient 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.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eA total of 710 researchers responded. Almost half (334, 47%) said they had involved PPI partners ion their trial. A fifth of these researchers reported that they included PPI partners as co-authors. Just under half (44%) reported that they had provided financial support for the time of their PPI partner. \u0026nbsp;Over a third did not cover expenses. Of those who completed all three questions almost a third (30%) reported that all three options were provided to PPI partners. However, 40 (15%) reported that they provided none of the options.\u0026nbsp;\u003c/p\u003e"},{"header":"BACKGROUND","content":"\u003cp\u003ePatient and public involvement (PPI) \u0026ndash; in which there is active collaboration between researchers and patients or the public\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e \u0026ndash; in the design and conduct of clinical trials enables research that is meaningful, relevant, and important to individuals with lived experience of an illness or condition.\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e Indeed, the impact of PPI on trial design and conduct is the subject of numerous reviews\u003csup\u003e\u003cspan additionalcitationids=\"CR5 CR6 CR7\" citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e and has been shown to improve trial recruitment.\u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThere is increasing awareness of the need to better understand how PPI partners are recognised and financially supported for their contributions to academic research.\u003csup\u003e\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e Recognition of PPI partners may include co-authorship or formal acknowledgement within manuscripts. Financial support may include remuneration, providing something of monetary value to someone in exchange for a service (e.g. honoraria or salary),\u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e or reimbursement of expenses incurred (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDefinitions of key terms\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTerm\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDefinition\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRecognition\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExamples might include acknowledgement or co-authorship on manuscripts, or co-presenting research findings at a conference.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRemuneration\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe provision of goods, services, or something of monetary value, in exchange for engagement. This may include offering payment or something of monetary value in exchange for their engagement. Examples might include honoraria, or a monetary amount based on contributed time or effort.\u003csup\u003e\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReimbursement\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThe repayment of out-of‐pocket expenses incurred. This may include travel, accommodation, parking, or child‐care support necessary to enable involvement in a research activity.\u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. \u003cem\u003eDefinitions of key terms\u003c/em\u003e\u003c/p\u003e \u003cp\u003eRemuneration and reimbursement may facilitate involvement by groups that face financial barriers to partnering in health research, thus enhancing equity, diversity, and inclusion regarding PPI in research.\u003csup\u003e\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e In a Canadian survey of over 600 patient partners in health research and care, 12% reported receiving disability and/or income replacement benefits and 43% were retired. Notably, almost one quarter of respondents indicated costs associated with being a patient partner as a barrier to engagement.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e Consequently, it has been argued that without remuneration PPI partners would largely consist of people who have the means to allocate unpaid time and energy towards research. Therefore, not offering remuneration may exclude potential PPI partners from equity deserving groups or communities.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eA recent systematic review of health studies that specifically cited the Guidance for Reporting the Involvement of Patients and the Public (GRIPP)\u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e or GRIPP2\u003csup\u003e14\u003c/sup\u003e reporting guidelines identified 316 studies that had actively engaged PPI partners. Of these, within 206 (65%) PPI partners were acknowledged within the manuscripts, 156 (49%) included a PPI partner as a co-author, and in 67 (21%) it was reported that PPI partners were provided reimbursement of expenses incurred. In addition,79 studies (25%) reported that remuneration was provided.\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e Other studies have reported the prevalence of patient or public authorship in child health research,\u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e knowledge syntheses,\u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e and health research more generally.\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e However, even with the social and ethical rationales, and multiple guidance documents,\u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan additionalcitationids=\"CR20\" citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e there is a lack of research reporting on the recognition, remuneration or reimbursement of PPI partners in clinical trials.\u003c/p\u003e \u003cp\u003eTo address this gap, we surveyed corresponding authors - identified from a cohort of pragmatic randomised controlled trials (RCTs) published between 2014 and 2019\u003csup\u003e22\u003c/sup\u003e - to determine whether and how patient and public partners (PPI partners) were recognised, remunerated, and reimbursed. Specifically, we sought to answer the following questions: Among trialists that engaged PPI partners, what is the self-reported prevalence of:\u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eRecognition through authorship or acknowledgement of PPI partners in the manuscript?\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eRemuneration for PPI partners?\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eReimbursement for out-of-pocket expenses incurred by PPI partners?\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eCombinations of these forms of recognition, remuneration, and reimbursement?\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e"},{"header":"METHODS","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSample and sampling frame\u003c/h2\u003e \u003cp\u003eAs reported previously,\u003csup\u003e\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u003c/sup\u003e we surveyed corresponding authors of pragmatic RCTs published between January 1, 2014, and April 3, 2019. The RCTs were identified as part of a scoping review of health-focused trials that were deemed to be pragmatic in orientation. The review identified 4337 eligible trials, with most trials published in the USA, UK, and Australia. The details of the search strategy and full results of the scoping review have been published previously.\u003csup\u003e\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u003c/sup\u003e The survey was developed iteratively through discussion and written feedback by two PPI partners (AH, MS), trialists, and methodologists who support PPI. All team members were involved in developing the items along with wording and choice options. Our PPI partners provided insights into items and aspects of recognition, remuneration, and reimbursement that were important and relevant to PPI partners, as well as informing the choice options included within survey questions.\u003c/p\u003e \u003cp\u003eSubsequently we surveyed corresponding authors of these trials to better understand PPI practices. As reported elsewhere,\u003csup\u003e\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u003c/sup\u003e we identified corresponding authors in the following countries: Canada, United States, United Kingdom, Australia and New Zealand, South Africa, France, Belgium, Denmark, Finland, Germany, Italy, the Netherlands, Norway, Spain, Sweden and Switzerland, which yielded 3501 eligible trials. As individuals could potentially be the corresponding author for multiple reports, we selected only the most recently published report. This provided a sampling frame of 3163 unique corresponding authors. Where the corresponding authors had no email addresses listed, we used online searches to identify an email address.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eThe survey was administered using the SurveyMonkey online platform. The survey consisted of 27 open- and closed-ended items relating to PPI in the published trial. The survey included a definition of PPI and respondents were asked to indicate that they had read and understood the definition prior to completing the survey. A copy of the full survey is included as a Supplementary File S1.\u003c/p\u003e \u003cp\u003e The survey was piloted with a random sample of 100 corresponding authors. No substantive changes were made, and pilot data were included in the final analysis. Invitation emails sent to the corresponding authors included information about the trial for which they were being approached as well as a unique link which allowed for survey responses to be linked to trial characteristics already collected as part of the previous scoping review. All participants were prompted to review a participant information sheet at the start of the survey and were advised that completing the survey was voluntary and doing so provided implied consent to participate. Survey participants were given the option to be entered into a draw for one of five \u003cspan\u003e$\u003c/span\u003e100 CAD Amazon gift cards. Email invitations were sent on February 8, 2022, followed by up to three reminders. The survey was closed on April 5, 2022.\u003c/p\u003e \u003cp\u003eThis paper focuses on the survey questions that pertained to PPI partner recognition (authorship or acknowledgment), remuneration, or reimbursement. Specifically, survey respondents who reported that PPI partners were involved in the trial were asked:\u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eWere PPI partners acknowledged in the manuscript or elsewhere? Response options: Named as co-author(s); Included in group authorship (e.g., \"on behalf of...\"); Named in acknowledgements section; Not applicable: Patient/public partners elected not to be acknowledged; Other (please specify); None of the above)\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eWere PPI partners remunerated beyond expenses? Response options: Yes; No; Don\u0026rsquo;t know (please explain)\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eWere PPI partners reimbursed for expenses incurred? Response options: Yes, always; Yes, sometimes; No; Don\u0026rsquo;t know; Not applicable \u0026ndash; no expenses were incurred by patient and public partners; Other (please specify)\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eThis study was approved by the Ottawa Health Science Network Research Ethics Board (Reference number: 20210684-01H). In addition, both PPI partners reviewed the main study protocol and provided feedback on the process and survey content. Both patient partners have reviewed the present manuscript and provided critical feedback. The study is reported in accordance with the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) and the GRIPP2-SF.\u003c/p\u003e\n\u003ch3\u003eData curation and analysis\u003c/h3\u003e\n\u003cp\u003eSurvey data were exported from SurveyMonkey into a spreadsheet using Airtable.\u003csup\u003e\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u003c/sup\u003e Participant\u003c/p\u003e \u003cp\u003echaracteristics and responses about PPI were summarised using descriptive statistics (frequencies and percentages). All survey responses were analysed regardless of completeness. Most survey items were closed-ended, but many allowed respondents to select \u0026ldquo;Other\u0026rdquo; and elaborate in a text box. When the \u0026lsquo;Other\u0026rsquo; category was selected, the open text provided was independently reviewed by two members of the team and coded using a thematic analysis approach.\u003csup\u003e\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u003c/sup\u003e The team members subsequently met to discuss coding and come to consensus on the coding scheme. Disagreements were resolved by discussion. Based on the open text responses to the \u0026lsquo;Other\u0026rsquo; category we created two additional categories for the question about recognition (question 1 above): \u0026lsquo;Acknowledged in the body of the manuscript\u0026rsquo; and \u0026lsquo;Co-authors on/ acknowledged in ancillary research material\u0026rsquo; as well as a category of \u0026lsquo;Unsure or unclear\u0026rsquo;. In addition, we explored how many respondents had indicated combinations of each support (recognition -authorship or acknowledgement, remuneration, or reimbursement). To facilitate this analysis, we dichotomised responses to yes versus any other response for all three questions (with yes referring to authorship, acknowledgement or both for the question about recognition), thus creating eight permutations.\u003c/p\u003e"},{"header":"RESULTS","content":"\u003cp\u003eA total of 3163 unique corresponding authors were invited to complete the survey. Of these, 508 emails were undeliverable and 70 did not receive emails as they had opted out of being contacted by SurveyMonkey. Of the delivered invitations, 710/2585 (27%) responded, with 334/710 (47%) indicating that they had engaged with PPI partners within the trial. Demographic characteristics of respondents who had engaged with PPI partners are shown in Table\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, with a breakdown by year of trial publication in the Supplementary Table. In the remainder of the paper, we focus on the responses from these 334 individuals.\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\u0026nbsp;\u003ctable id=\"Tab2\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eRespondent characteristics (N\u0026thinsp;=\u0026thinsp;334), * Multiple selections allowed.\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003ccolgroup cols=\"2\"\u003e\u003c/colgroup\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\" style=\"width: 83.9852%;\"\u003e\n \u003cp\u003eItem\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" style=\"width: 15.8286%;\"\u003e\n \u003cp\u003eN (valid %)\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003cth align=\"left\" style=\"width: 83.9852%;\"\u003e\n \u003cp\u003eTrial population (self-report)\u003c/p\u003e\n \u003cp\u003eChildren (\u0026lt;\u0026thinsp;18 years) only\u003c/p\u003e\n \u003cp\u003eOlder adults (\u0026gt;\u0026thinsp;65 years) only\u003c/p\u003e\n \u003cp\u003eNeither of the above\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" style=\"width: 15.8286%;\"\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e71 (21.3%)\u003c/p\u003e\n \u003cp\u003e46 (13.8%)\u003c/p\u003e\n \u003cp\u003e217 (65%)\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003cth align=\"left\" style=\"width: 83.9852%;\"\u003e\n \u003cp\u003eRegion of Residence*\u003c/p\u003e\n \u003cp\u003eUSA\u003c/p\u003e\n \u003cp\u003eUK\u003c/p\u003e\n \u003cp\u003eNon-UK Europe\u003c/p\u003e\n \u003cp\u003eAustralia or New Zealand\u003c/p\u003e\n \u003cp\u003eCanada\u003c/p\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003cp\u003eMissing\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" style=\"width: 15.8286%;\"\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e103 (35.8%)\u003c/p\u003e\n \u003cp\u003e81 (28.1%)\u003c/p\u003e\n \u003cp\u003e62 (21.5%)\u003c/p\u003e\n \u003cp\u003e35 (12.2%)\u003c/p\u003e\n \u003cp\u003e13 (4.5%)\u003c/p\u003e\n \u003cp\u003e6 (2.1%)\u003c/p\u003e\n \u003cp\u003e46\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 83.9852%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGender\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003cp\u003ePrefer not to disclose or missing\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 15.8286%;\"\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e114 (39.7%)\u003c/p\u003e\n \u003cp\u003e173 (60.3%)\u003c/p\u003e\n \u003cp\u003e47\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 83.9852%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e25\u0026ndash;35 years\u003c/p\u003e\n \u003cp\u003e36\u0026ndash;45 years\u003c/p\u003e\n \u003cp\u003e46\u0026ndash;55 years\u003c/p\u003e\n \u003cp\u003e56\u0026ndash;65 years\u003c/p\u003e\n \u003cp\u003e\u0026gt;\u0026thinsp;65 years\u003c/p\u003e\n \u003cp\u003eMissing\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 15.8286%;\"\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e6 (2.0%)\u003c/p\u003e\n \u003cp\u003e49 (16.7%)\u003c/p\u003e\n \u003cp\u003e84 (28.6%)\u003c/p\u003e\n \u003cp\u003e94 (32.0%)\u003c/p\u003e\n \u003cp\u003e61 (20.7%)\u003c/p\u003e\n \u003cp\u003e40\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 83.9852%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRacial or ethnic group*\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eWhite\u003c/p\u003e\n \u003cp\u003eSouth Asian (Indian, Pakistani, Sri Lankan)\u003c/p\u003e\n \u003cp\u003eChinese\u003c/p\u003e\n \u003cp\u003eBlack\u003c/p\u003e\n \u003cp\u003eLatin American/Hispanic\u003c/p\u003e\n \u003cp\u003eArab\u003c/p\u003e\n \u003cp\u003eWest Asian (Iranian, Afghan)\u003c/p\u003e\n \u003cp\u003eKorean\u003c/p\u003e\n \u003cp\u003eJapanese\u003c/p\u003e\n \u003cp\u003eOther (specified text)\u003c/p\u003e\n \u003cp\u003ePrefer not to disclose or missing\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 15.8286%;\"\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e256 (89.5%)\u003c/p\u003e\n \u003cp\u003e13 (4.5%)\u003c/p\u003e\n \u003cp\u003e3 (1.0%)\u003c/p\u003e\n \u003cp\u003e6 (2.1%)\u003c/p\u003e\n \u003cp\u003e4 (1.4%)\u003c/p\u003e\n \u003cp\u003e1 (0.3%)\u003c/p\u003e\n \u003cp\u003e1 (0.3%)\u003c/p\u003e\n \u003cp\u003e1 (0.3%)\u003c/p\u003e\n \u003cp\u003e1 (0.3%)\u003c/p\u003e\n \u003cp\u003e2 (0.7%)\u003c/p\u003e\n \u003cp\u003e48\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 83.9852%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eStage of research career\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eEarly career researcher (within 5 years of first academic appointment)\u003c/p\u003e\n \u003cp\u003eMid-career researcher (6\u0026ndash;15 years since first academic appointment)\u003c/p\u003e\n \u003cp\u003eLate career researcher (\u0026gt;\u0026thinsp;15 years since first academic appointment)\u003c/p\u003e\n \u003cp\u003eRetired or Professor Emeritus\u003c/p\u003e\n \u003cp\u003eOther (e.g., no academic appointment)\u003c/p\u003e\n \u003cp\u003eMissing\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 15.8286%;\"\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e13 (4.4%)\u003c/p\u003e\n \u003cp\u003e67 (22.7%)\u003c/p\u003e\n \u003cp\u003e203 (68.8%)\u003c/p\u003e\n \u003cp\u003e8 (2.7%)\u003c/p\u003e\n \u003cp\u003e4 (1.4%)\u003c/p\u003e\n \u003cp\u003e39\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 83.9852%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eReported years of PPI experience\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e1\u0026ndash;3 years\u003c/p\u003e\n \u003cp\u003e4\u0026ndash;10 years\u003c/p\u003e\n \u003cp\u003e\u0026gt;\u0026thinsp;10 years\u003c/p\u003e\n \u003cp\u003eMissing\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 15.8286%;\"\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e12 (4.1%)\u003c/p\u003e\n \u003cp\u003e95 (32.1%)\u003c/p\u003e\n \u003cp\u003e189 (63.9%)\u003c/p\u003e\n \u003cp\u003e38\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n\u003c/div\u003e\n\u003cp\u003eTable \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e. \u003cem\u003eRespondent characteristics\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMost participants identified as female (173, 60%), white (256, 90%) and late career researchers (203, 69%). The highest proportions of respondents were based in the USA (103, 36%) or UK (81, 28%). Respondents were largely experienced with PPI, with 189 (64%) indicating they had over 10 years PPI experience. The number of respondents increased by year (Supplementary Table).\u003c/p\u003e\n\u003ch3\u003eRecognition through authorship or acknowledgement\u003c/h3\u003e\n\u003cp\u003eThree hundred respondents completed the question regarding PPI recognition through acknowledgement or co-authorship. Of these, 194 respondents indicated some form of authorship or acknowledgment in the manuscript or within other materials (65%). In over a quarter of responses, patient and public partners were reported as being included as authors, either as individual authors (59, 20%) or as part of a group authorship (19, 6%). However, the most common form of recognition was acknowledgement of PPI partners in a specific acknowledgement section (154, 51%), although acknowledgment in the main body of the text (9, 3%) or in other publications or material (5, 2%) was also noted. Acknowledgements were reported to vary, with some naming PPI partners while others reported acknowledgement was to a generic group or as a general thanks to PPI partners. In 35 responses (12%), it was indicated that patient and public partners elected not to be acknowledged. However, 70 respondents (23%) indicated that PPI partners were not acknowledged or listed as co-authors (Table\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e). We did not see any indication of a trend over time (see Supplementary Figure)\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n \u003cdiv align=\"left\" class=\"colspec\"\u003e\u003cbr\u003e\u003c/div\u003e\u0026nbsp;\u003ctable id=\"Tab3\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eDetails of recognition, remuneration, and reimbursement. \u0026yen; does not sum to 100% as multiple selections possible. \u0026sect; indicates categories developed post-hoc upon review of open responses in \u0026lsquo;other\u0026rsquo; category.\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003ccolgroup cols=\"2\"\u003e\u003c/colgroup\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eItem\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eFrequency (valid %)\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003eHow were PPI partners acknowledged in the manuscript or other materials?\u003c/em\u003e\u003csup\u003e\u003cem\u003e\u0026yen;\u003c/em\u003e\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNamed as individual co-authors\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59 (20%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eIncluded in group authorship\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e19 (6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNamed in the acknowledgement section\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e154 (51%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAcknowledged in the body of the manuscript\u003csup\u003e\u0026sect;\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e9 (3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCo-authors on/ acknowledged in ancillary research material\u003csup\u003e\u0026sect;\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e5 (2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNot applicable: patient or public partners elected not to be acknowledged\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e35 (12%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUnsure or unclear\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e5 (2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNone of the above\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e70 (23%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo answer/missing\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e34\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003eWere PPI partners remunerated (e.g., cash, vouchers, honoraria) for their involvement?\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e132 (44%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e158 (53%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eI don\u0026rsquo;t know/Unclear\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e10 (3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo answer/missing\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e34\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003eWere PPI partners reimbursed for out-of-pocket expenses related to their involvement\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes (i.e., always, sometimes)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e186 (61%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e73 (24%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNot applicable (i.e., no expenses were incurred by patient and public partners)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e35 (12%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eI don\u0026rsquo;t know\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e9 (3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo answer/missing\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\n \u003ch2\u003eRemuneration of PPI partners\u003c/h2\u003e\n \u003cp\u003eThree hundred respondents completed the question regarding the remuneration of PPI partners. Of these, 132 respondents (44%) indicated that they provided some form of remuneration (e.g., cash salary, vouchers, honoraria). Some respondents provided additional comments using the option of \u0026lsquo;Don\u0026rsquo;t know (please explain)\u0026rsquo; and noted that there could be varied remuneration within studies, with some PPI partners remunerated while others were not. For example, representatives of community organisations may be remunerated but partners representing a school may not. Again, we did not see any indication of a change in practice over time (see Supplementary Figure)\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003ePPI partner reimbursement\u003c/h3\u003e\n\u003cp\u003eA total of 303 respondents completed the question regarding reimbursement. Most of these respondents (186, 61%) indicated that PPI partners were reimbursed for expenses incurred, although almost one quarter (73, 24%) indicated that they were not. Thirty-five respondents (12%) indicated that no expenses were incurred by PPI partners, while 9 (3%) were unsure if PPI partners were reimbursed for expenses. While we did not require an explanation to why PPI partners were not reimbursed, some respondents indicated that they had not provided explicit reimbursement as the PPI partners had received an honorarium, which was expected to cover minimal costs that were incurred. Some respondents used the \u0026lsquo;Other\u0026rsquo; category to provide additional details, with examples of reimbursed costs including travel expenses (including parking), or meals. Once more, we did not see any indication of a change in practice over time (see Supplementary Figure).\u003c/p\u003e\n\u003cp\u003eTable \u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e. \u003cem\u003eDetails of recognition, remuneration, and reimbursement.\u003c/em\u003e\u003c/p\u003e\n\u003ch3\u003eCombination of practices\u003c/h3\u003e\n\u003cp\u003eOf 274 respondents who completed all three questions regarding recognition, remuneration and reimbursement (excluding those whose responses were \u0026ldquo;I don\u0026rsquo;t know\u0026rdquo;), 83 (30%) indicated that all three were provided to PPI partners, while 41 (15%) indicated that they did not provide recognition (authorship or acknowledgement), remuneration, nor reimbursement. A similar number (40, 15%) provided only recognition without any remuneration or reimbursement, while 57 (21%) provided some form of remuneration or reimbursement but no recognition. A full breakdown of the percentage of respondents for each combination is presented in Fig. \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eAmong a cohort of survey respondents who had engaged patients or the public within a published pragmatic trial, less than half reported providing remuneration to PPI partners, and just over half reported reimbursing PPI partners for out-of-pocket expenses related to their involvement. PPI partners were commonly recognised through acknowledgement in publications, with a substantial minority named as co-authors. Almost a third of respondents completing all three questions indicated that they recognised PPI partners through acknowledgement or authorship, provided remuneration, and reimbursed PPI partners.\u003c/p\u003e \u003cp\u003eA strength of our study is that the data were obtained from a survey of corresponding authors as opposed to relying on extracting information from publications. The reporting of remuneration and reimbursement is not a requirement of either GRIPP2 or Consolidated Standards of Reporting Trials (CONSORT)\u003csup\u003e\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u003c/sup\u003e reporting guidelines and, as a consequence, there may be underreporting of remuneration and reimbursement within academic articles. Similarly, there remain challenges to identifying patient authors of manuscripts.\u003csup\u003e\u003cspan additionalcitationids=\"CR29\" citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e\u003c/sup\u003e The self-report nature of our survey removes any interpretation challenges. Finally, our analysis extends the current literature insofar as we also examined combinations of recognition practices, identifying a cohort of respondents who provided no form of remuneration, reimbursement or recognition for PPI partners.\u003c/p\u003e \u003cp\u003eThe results must, however, be reviewed in light of the study limitations. First, the response rate was low at 27%. While this may not be unexpected given the unsolicited nature of the survey and relatively long window of time for included trials, it has implications with respect to risks of non-response bias. We may have expected a larger proportion of respondents to not have provided any form of recognition, remuneration, or reimbursement, but with a change over time as policies were adopted by funders, especially given that over half of respondents were from the USA and UK and where funders and government agencies support PPI. As such, we must caution as to the generalisability of these findings to the broader population of trialists. Indeed, it is possible that authors more familiar with, or supportive of PPI and associated practices were more likely to respond to the survey request, thus, yielding an over-estimate of the prevalence of any form of recognition, remuneration, or reimbursement. A second limitation is the earlier publication date of some of the included trials: at the time of the survey, it had been almost 10 years since the publication of the earliest trials in the underlying cohort. While we did have a greater proportion of respondents with more recently published trials, the time that had passed since the completion of some trials may have influenced recall. Future research would benefit from a more contemporary sample which may address limitations of recall error and provide updated data regarding the recognition, remuneration and reimbursement of patient partners in RCTs. A final limitation is our decision to dichotomise the responses for our analysis of combined practices. While we excluded those who indicated a response of \u0026lsquo;Don\u0026rsquo;t know\u0026rsquo; it did include cases where expenses were not incurred and thus not reimbursed. As no expenses were reported to be incurred, we do not know whether these respondents would have reimbursed patient partners had they been incurred and as such the combined categories may overestimate the proportion of respondents who would not reimburse in combination with other forms of recognition or remuneration.\u003c/p\u003e \u003cp\u003eOur results do, however, offer new insights into how PPI partners are financially supported and recognised. Less than a fifth of respondents indicated that PPI partners were a named co-author, lower than previous studies which reported a prevalence of almost 50% co-authorship.\u003csup\u003e15, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e\u003c/sup\u003e However, both of those reviews targeted PPI as the topic of interest or had a sampling frame that required reference of the GRIPP\u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e or GRIPP2\u003csup\u003e14\u003c/sup\u003e reporting guidelines, and may represent best case scenarios with respect to implementing or reporting aspects of PPI. While we did not see a trend over time, Vanderhout \u003cem\u003eet al.\u003c/em\u003e, did find an increasing prevalence of PPI partner authors and/or acknowledged patient partners over time.\u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e Indeed, our results are closer to those of a review of PPI in cancer research which found that a third of the included studies had patients as co-authors.\u003csup\u003e\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e\u003c/sup\u003e This may point to variation between study designs or areas of research and would merit future study.\u003c/p\u003e \u003cp\u003eIn addition, twelve percent of respondents in our survey indicated that PPI partners declined to be acknowledged. While PPI partners wish to feel valued for their contributions to research,\u003csup\u003e\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u003c/sup\u003e there is a lack of research regarding the value that PPI partners place on traditionally academic forms of recognition such as authorship. More work is needed to understand the value that is placed in authorship or acknowledgement by PPI partners, but also the potential barriers to PPI partner authorship and acknowledgement. In the interim, PPI partners have written guidance for researchers and how the International Committee of Medical Journal Editors\u0026rsquo; (ICMJE) guidance can be interpreted for patient co-authors.\u003csup\u003e\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eOur survey indicates a much higher prevalence of remuneration than has been previously reported,\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e\u003c/sup\u003e with 44% of respondents indicating that PPI partners were financially compensated. However, as stated above, reporting of remuneration is not a requirement of any guidelines and as such there may be underreporting of costs and remuneration in publications as compared to our self-report data. To date there are few other studies to compare with and more empirical research exploring actual practices, together with the barriers and facilitators to providing remuneration, are needed.\u003c/p\u003e \u003cp\u003eOne surprising finding from our survey related to reimbursement for out-of-pocket expenses, with over a fifth of respondents indicating that PPI partners were not reimbursed for expenses incurred through their involvement. This stands in stark contrast to a recent scoping review which identified 67 international guidance and policy documents, all of which recommended reimbursing patient partners for any expenses associated with engagement.\u003csup\u003e\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e\u003c/sup\u003e We strongly suggest that researchers proactively consider the costs that may accrue to PPI partners and build these into their study budget to ensure that PPI partners are not left out of pocket for their involvement in research.\u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eFinally, we found that 15% of respondents who answered all three questions regarding recognition, remuneration, and reimbursement, indicated that none of the practices were implemented. While the approaches implemented may be determined by the extent to which expenses were incurred, availability of funding, and even whether PPI partners wish to be acknowledged, it is surprising that such a high proportion provided none of the recognition options. While studies have begun to explore the ways in which PPI partners are being remunerated or recognised in publications, we have not been able to identify other research that has examined the combination of recognition, remuneration and reimbursement and which may indicate whether particular practices are being adopted in lieu of others.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003e In conclusion, our results indicate that researchers report that less than a fifth of PPI partners were recognised as co-authors, a substantial minority are provided remuneration, and the majority are reimbursed. It is important that we ensure that PPI partners are not being left out-of-pocket for their involvement in research and which creates barriers to participation. There is also a need to better understand the nature of any barriers that research teams and PPI partners face regarding recognition, remuneration, and reimbursement, and to examine these in a holistic manner, in order to develop targeted interventions that will address these barriers.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was approved by the Ottawa Health Science Network Research Ethics Board (Reference number: 20210684-01H). All participants provided an implied consent by completing the survey.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll authors have reviewed the manuscript and consent to publication.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCharles Weijer reports receiving consulting fees from Eli Lilly \u0026amp; Company. Anne Spinewine reports receiving a Mobility Grant from Fondation Mont-Godinne. No other competing interests were declared.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work was supported by the Canadian Institutes of Health Research through the Project Grant competition (competitive, peer reviewed), award number PJT-153045. The funder had no role in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMT, CW and JB acquired funding for the study. MT, SN and SV contributed to the conception and design of the work. AH, MS, PN, SV, MT, SN and KC contributed to the acquisition of data. PN, MT, SN and SV contributed to the analysis and interpretation of data. SN wrote the initial version of the manuscript. All of the authors revised the manuscript critically for important intellectual content, gave final approval of the version to be published and agreed to be accountable for all aspects of the work.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors acknowledge Drs. Bruno Giraudeau and Agnes Caille (University of Tours), Dr Laura Hanson (University of North Carolina School of Medicine) and Dr Jill Harrison (Brown University) for assistance with pilot testing of the survey questionnaire. We also thank Dr Katie Gillies and Dr Beatriz Goul\u0026atilde;o, (University of Aberdeen) for contributions to the development of the survey questionnaire.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eCanadian Institutes of Health Research. Patient engagement. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://cihr-irsc.gc.ca/e/45851.html\u003c/span\u003e\u003cspan address=\"https://cihr-irsc.gc.ca/e/45851.html\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e (2019, accessed 25 October 2024).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNational Institute for Health Research. 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Recognizing patient partner contributions to health research: a mixed methods research protocol. Res Involv Engagem. 2022;8:24. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s40900-022-00354-w\u003c/span\u003e\u003cspan address=\"10.1186/s40900-022-00354-w\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Patient and public involvement, compensation, survey, questionnaire, ethics, authorship, acknowledgement, reimbursement, remuneration","lastPublishedDoi":"10.21203/rs.3.rs-6727717/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6727717/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAims:\u003c/strong\u003e 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).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eCross sectional survey of corresponding authors of pragmatic RCTs published between January 1, 2014, and April 3, 2019.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eFrom 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion: \u003c/strong\u003eA 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.\u003c/p\u003e","manuscriptTitle":"Recognition, remuneration and reimbursement of patient and public involvement partners in pragmatic randomised controlled trials. A survey of author practices","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-02 07:09:09","doi":"10.21203/rs.3.rs-6727717/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-07-15T11:24:37+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-15T09:08:30+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-06-30T10:04:17+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"294936683699724431014110557053071447953","date":"2025-06-27T10:21:49+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-06-10T22:09:28+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-06-10T20:20:18+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"326047716011717374938380018519652914301","date":"2025-06-03T05:13:24+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"123321749657646475631398380287240391348","date":"2025-05-29T15:17:21+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"30746138023505929826526577935992445309","date":"2025-05-27T15:29:46+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-05-27T08:53:54+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-05-27T03:29:41+00:00","index":"","fulltext":""},{"type":"submitted","content":"Research Involvement and Engagement","date":"2025-05-23T13:38:39+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"0ad164f7-cfeb-40b6-bdfc-4032bc126f84","owner":[],"postedDate":"June 2nd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-12-15T16:08:29+00:00","versionOfRecord":{"articleIdentity":"rs-6727717","link":"https://doi.org/10.1186/s40900-025-00796-y","journal":{"identity":"research-involvement-and-engagement","isVorOnly":false,"title":"Research Involvement and Engagement"},"publishedOn":"2025-12-11 15:57:30","publishedOnDateReadable":"December 11th, 2025"},"versionCreatedAt":"2025-06-02 07:09:09","video":"","vorDoi":"10.1186/s40900-025-00796-y","vorDoiUrl":"https://doi.org/10.1186/s40900-025-00796-y","workflowStages":[]},"version":"v1","identity":"rs-6727717","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6727717","identity":"rs-6727717","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}