Recognizing patient partner contributions to health research: a systematic review of reported practices

Background Patient engagement in research refers to collaboration between researchers and patients (i.e., individuals with lived experience including informal caregivers) in developing or conducting research. Offering non-financial (e.g., co-authorship, gift) or financial (e.g., honoraria, salary) compensation to patient partners can demonstrate appreciation for patient partner time and effort. However, little is known about how patient partners are currently compensated for their engagement in research. We sought to assess the prevalence of reporting patient partner compensation, specific compensation practices (non-financial and financial) reported, and identify benefits, challenges, barriers and enablers to offering financial compensation. Methods We conducted a systematic review of studies citing the Guidance for Reporting the Involvement of Patients and the Public (GRIPP I and II) reporting checklists (October 2021) within Web of Science and Scopus. Studies that engaged patients as research partners were eligible. Two independent reviewers screened full texts and extracted data from included studies using a standardized data abstraction form. Data pertaining to compensation methods (financial and non-financial) and reported barriers and enablers to financially compensating patient partners were extracted. No formal quality assessment was conducted since the aim of the review is to describe the scope of patient partner compensation. Quantitative data were presented descriptively, and qualitative data were thematically analysed. Results The search identified 843 studies of which 316 studies were eligible. Of the 316 studies, 91% (n = 288) reported offering a type of compensation to patient partners. The most common method of non-financial compensation reported was informal acknowledgement on research outputs (65%, n = 206) and co-authorship (49%, n = 156). Seventy-nine studies (25%) reported offering financial compensation (i.e., honoraria, salary), 32 (10%) reported offering no financial compensation, and 205 (65%) studies did not report on financial compensation. Two key barriers were lack of funding to support compensation and absence of institutional policy or guidance. Two frequently reported enablers were considering financial compensation when developing the project budget and adequate project funding. Conclusions In a cohort of published studies reporting patient engagement in research, most offered non-financial methods of compensation to patient partners. Researchers may need guidance and support to overcome barriers to offering financial compensation.


Introduction
Patient engagement in research-also commonly referred to as a patient and public involvement [1] or patient and public engagement [2]-refers to the active inclusion of individuals with lived experience of a health issue, including informal caregivers, family and friends [3], in the research process [4].It is research carried out 'with' patients and not 'on' , 'about' or 'for' them [5].Patient engagement in research yields numerous benefits including improved study quality, better clinical trial recruitment, and alignment of research priorities with needs of the ultimate end user [6].As a result, there is growing advocacy for patient engagement in health research [6][7][8].
Recognizing patient partner contributions by offering non-financial or financial compensation has been proposed as a strategy to encourage continued patient engagement and demonstrate that patient partner efforts are valued [9].Feeling valued is crucial to fostering an inclusive team atmosphere, which plays a pivotal role in supporting sustained and active patient engagement in research [10,11].Patient partner recognition methods can be non-financial (e.g., co-authorship) or financial (e.g., honoraria).Financial compensation, in particular, can serve as a facilitator by addressing important barriers to engagement [12].Without financial compensation, only patient partners with time and resources will be able to become patient partners.To support researchers in developing compensation strategies, several patient-oriented organizations have developed guidance documents encompassing both non-financial and financial methods [13][14][15][16].In addition, some funding agencies have established guidelines to assist applicants in budgeting for engagement [15][16][17][18][19][20][21].Despite available guidance and policies, little is known regarding how researchers recognize patient partners either non-financially or financially.Similarly, researcher attitudes on financial compensation including benefits, challenges, barriers and enablers remain unclear.
Given this significant knowledge gap, the aim of our systematic review was to answer the following research questions: How are researchers compensating patient partners for their contributions to research?What is the prevalence of reporting patient partner financial compensation?and What are researcher attitudes towards patient partner financial compensation, including perceived benefits, challenges, barriers and enablers to offering financial compensation?To address these research questions we assessed the prevalence of reporting patient partner compensation among published research that engaged patients as well as identified non-financial and financial methods of compensation, the monetary values of financial compensation, and any guidance documents reported as informing the approaches.The review findings provide a contemporary overview of compensation strategies to help researchers, and inform implementation strategies to better support patient partner compensation.

Methods
Our systematic review was conducted in accordance with methodology detailed in the Cochrane Handbook for Systematic Reviews of Interventions [22] and this report is prepared in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) reporting guidelines (Appendix 1) [23].The protocol was published as part of a larger research program [24] and can be found on the International Prospective Register of Systematic Reviews (PROSPERO ID: CRD42022303226).A patient partner (MS) was engaged in this study and engagement activities are reported using the Guidance for Reporting the Involvement of Patients and the Public (GRIPP2) [25] checklist (Appendix 2).

Search strategy and information sources
We identified studies that cited the Guidance for Reporting the Involvement of Patients and the Public (GRIPP 1 and 2) [25,26] checklists to report engagement activities and outcomes.Using this forward citation search, we hypothesised that we were more likely to capture a cohort of studies that had engaged patients as partners than we would have with a broader search filter; previous studies have demonstrated a very low rate of reporting patient engagement in research overall [27], thus the specificity of a broad literature search would be exceedingly low rendering the review infeasible.Consequently, we chose studies that reference GRIPP or GRIPP2 as a specific, efficient, and targeted search strategy to identify a cohort of published studies that had engaged patients.The forward citation search was conducted using the Scopus and Web of Science databases on October 14, 2021.An information specialist (Lindsey Sikora, Health Sciences Research Librarian, University of Ottawa) was consulted when developing the forward citation search strategies.All included studies were necessarily published after the GRIPP I publication date (2011).

Eligibility criteria
We included studies that were written in English, reference the GRIPP checklists (I or II) [25,26] and engaged or described engaging patients in health research, in which members of the public or patients (i.e., an individual with lived experience of a health condition as well as informal caregivers, including family, friends, or members of patient organizations) are engaged as partners (provided input, guidance, consultation on at least one element of the research process) [4].
Studies that engaged patients as partners as well as participants (i.e., subjects of research) were included in the review, while studies where patients were involved solely as research participants were excluded.Examples of research engagement include priority-setting, governance, developing the research question, identifying study outcomes, study design, informing statistical analysis, interpreting study findings and disseminating results [28].We included all study designs (e.g., qualitative, quantitative, evidence synthesis, mixed-methods research).Studies that described the patient engagement in research component as a part of a larger research project were included.Studies that interviewed patients about their experiences as patient partners were excluded as patients were participants in the research [29].Conference abstracts and commentaries were also excluded.

Selection process
All records identified by the literature search were uploaded to DistillerSR (a cloud-based software program that facilitates systematic reviews) (Evidence Partners Incorporated, Ottawa, Canada) [30].After duplicate removal, reviewers (GF, TS, FA) independently screened full-text articles according to the pre-specified eligibility criteria.The screening process was piloted for the first 20 articles to ensure reliability between reviewers.A third reviewer (DAF or MML) was consulted if reviewers could not reach consensus.Reasons for exclusion were recorded using the PRISMA flow diagram.

Data collection process
Two reviewers (GF, TS) independently extracted data from studies included in the systematic review using a data extraction form in DistillerSR.Data extraction was piloted for the first five studies to ensure consistency.After piloting, the reviewers extracted data from sets of 20 studies and resolved conflicts between each set.A third reviewer (DAF or MML) was consulted if reviewers could not reach consensus.We did not contact authors for missing or additional information since the focus of this systematic review was on the reporting of patient partner compensation practices.

Data items
Extracted items included study characteristics (e.g., author information, source of funding), patient engagement characteristics (e.g., level of engagement, type of stakeholder engaged), details of patient partner compensation (e.g., non-financial and financial practices), and any reported benefits, challenges, barriers and enablers to financial compensation.The country of the corresponding author's institutional location was also extracted.For the purposes of this review, we defined non-financial compensation as offering tokens of appreciation or services in exchange for patient partnership on a research project, and financial compensation as offering something of direct monetary value in exchange for their involvement [19,31,32].Gifts or gift cards were considered financial compensation only when the value was informed by a formal conversion (i.e., 2 h of work at $25 per hour = $50 gift or gift card value) or where they were reported as being given as a substitute for monetary payment based on the work undertaken.Financial compensation practices were identified based on reports with no initial list of categories.Rather, categories were developed inductively based on the developing list of items.For example, financial compensation based on a fixed monetary value (irrespective of workload) was defined as honoraria.While reported variously as being paid cash, cheques or stipend, these approaches were grouped under the category of honoraria.Studies that explicitly reported offering a salary to patient partners were grouped under the category of salary.Patient engagement activities were categorized as Consult, Collaborate, and Empower levels of engagement in accordance with definitions developed by the National Institute for Health and Care Research (NIHR) [33].It is important to note that studies could achieve more than one level of engagement if different activities took place at different stages of the same research study.Engagement activities were categorized as occurring at different stages of the research process (e.g., study design, data collection, data analysis), governance (i.e., member of a committee overseeing the research project), general priority setting (i.e., identifying research priorities to inform future research) or general outcome derivation (i.e., identifying outcomes to be captured in future studies).A full list of data extraction items can be found in Appendix 3.

Study risk of bias assessment
No formal quality assessment was conducted for included studies since the aim of the review is to describe the use and type of patient partner compensation.

Synthesis methods
Patient engagement and compensation details (e.g., stakeholders engaged, length of engagement, type of financial compensation offered) were created inductively and analyzed descriptively.Prevalence of reporting patient partner financial compensation was calculated.Qualitative data (reported benefits, challenges, barriers and enablers to patient partner compensation) were analyzed thematically in accordance with the 6-step approach developed by Braun and Clark [34].Verbatim statements were extracted by two independent reviewers (GF, TS) and stored in an Excel file.Two independent reviewers (GF, SN) read through extracted verbatim statements and generated initial codes within each of the five domains (benefits, challenges, barriers, enablers, justification).Reviewers met regularly to resolve discrepancies between initial codes.Initial codes were collated into overarching themes and reoccurring themes were combined.The frequency of reported themes was recorded.

Subgroup analysis
Prespecified subgroup analyses of reporting patient partner financial compensation were performed according to funding (funded vs. non-funded) and level of engagement (Consult, Collaborate, Empower) [35].Given that levels of engagement are ordered based on the level of impact that patient partners have on decision making, we compared studies based on the highest level of engagement reported.For example, studies that engaged patient partner's at all three levels of engagement were in the same subgroup as studies that only engaged patient partners at the Empower level of engagement since both achieved Empower as the highest level of engagement.A post hoc subgroup analysis by country (comparing studies conducted in the United States, Canada and the United Kingdom with the remaining studies) was conducted following consultation with a group of patient partners (i.e., Ontario SPOR Support Unit Patient Partner Working Group).This was based on the hypothesis that studies conducted in the United States, Canada and the United Kingdom may be more likely to practice patient partner compensation given support from wellestablished national infrastructures (i.e., Patient Centered Outcomes Research Institute (PCORI), Canadian Institutes of Health Research (CIHR), and National Institutes for Health and Care Research (NIHR) respectively).Subgroup proportions were compared using Chi-square tests.

Patient and public involvement
One patient partner (MS) informed project development (e.g.review proposals and protocols, identifying sources, research question generation) and provided feedback on project conduct (e.g., data extraction, interpretation).MS has a wealth of experience with various facets of patient engagement in research including experience with various methods of compensation.Monthly meetings occurred with MS to discuss research findings as the systematic review progressed.We co-developed a terms of reference document a priori to establish details of engagement (e.g., expectations, project goals, compensation).Our patient engagement in research plan was informed by INVOLVE's Seven Core Principles of Engagement [36] and the CIHR Strategies for Patient Oriented Research (SPOR) Patient Engagement framework [3].Co-authorship and financial compensation were agreed upon with the patient partner and offered as a method of acknowledgement according to the SPOR Evidence Alliance Patient Partner Appreciation Policy [13].
The aim of collaboration was to ensure that the patient perspective was considered throughout the project.

Search results
Our search retrieved 843 studies.After removing duplicates, 518 studies were screened and assessed for eligibility and a total of 316 studies were included in the systematic review.Screening results are presented using a PRISMA flow diagram (Fig. 1).A full list of included studies can be found in Appendix 4.

Patient engagement in research characteristics
Studies reported engaging a variety of stakeholders including patients (78%, n = 246), caregivers (35%, n = 111), and members of patient organizations (16%, n = 50) (Table 1).A median of five patient partners were reported for each study with a range of 1-705 patient partners.The study reporting 705 patient partners detailed three engagement efforts, including a conference event attended by patient partners [37].

Reporting non-financial compensation practices
Of the 316 studies, 91% (n = 288) reported offering some type of compensation (i.e., non-financial or financial compensation) to patient partners.The most common reported method of non-financial compensation was informal acknowledgement on research outputs (e.g., acknowledgement section in publications, dissemination documents, presentations) (65%, n = 206) and co-authorship (49%, n = 156) (Table 3).Additional methods of non-financial compensation included facilitating patient partner attendance at conferences (7%, n = 2) and offering training opportunities (12%, n = 4).Twenty-eight (9%) studies reported not offering any form of non-financial compensation to patient partners.

Reporting financial compensation practices
Of the 316 studies, 25% (n = 79) reported offering financial compensation.Sixty-two (19%) reported offering financial compensation to all patient partners, 17 (5%) studies reported offering financial compensation to some patient partners, 32 (10%) explicitly reported that patient partners were not offered any form of financial compensation, and 205 studies (65%) did not report on financial compensation (Table 4).We identified several reported methods of offering financial compensation including honoraria (e.g., cheques, stipend) (58%, n = 46), gift cards (16%, n = 13), salary (5%, n = 4) and scholarship (1%, n = 1).Sixteen (20%) studies reported offering task-based financial compensation (e.g., attended meeting, document review), while other studies used units of time (e.g., half-day meeting, per hour, full-time-equivalent salary rate) to inform the monetary value of financial compensation (14%, n = 11).Reported compensation rates ranged from $12 to $42 USD per hour or $31 to $94 USD for attendance at a half-day meeting (which at approximately 4 h would convert to $7.75-23.50USD per hour) (Table 4).However, the majority of studies in which financial compensation was provided did not report the monetary value of financial compensation (72%, n = 57).In terms of payment frequency, thirteen (16%) studies reported providing financial compensation as a one-time payment, four (5%) studies paid patient partners immediately after completion of a task, and one (1%) study provided patient partners with an annual payment [38].Most studies (77%, n = 61) did not report on payment frequency.
The most referenced documents used to inform financial compensation strategies were developed by the NIHR and INVOLVE (n = 22) including Payment and Recognition for Public Involvement [15], Policy on payment of fees and expenses for members of the public actively involved with Involve [39], and Recognition payments for public contributors [40].Five studies used local minimum wage rates or national costs of living to inform the monetary value of financial compensation offered to patient partners.

Subgroup analysis
Studies that reported receipt of funding were significantly more likely to report financial compensation of patient partners when compared to studies that did not receive funding or did not report funding ( χ 2 =6.614, p < 0.01).Additionally, there was a significant difference in reporting patient partner financial compensation between studies that engaged patients at different levels (Consult, Collaborate and Empower) ( χ 2 = 42.41,p < 0.01).This finding suggests that reporting patient partner financial compensation and the level at which patients were engaged, are not independent of each other.Indeed, 42% (n = 47) of studies that achieved Consult as the highest level of engagement (n = 111) reported offering financial compensation to all or some patient partners, compared to 67% (n = 49) of studies that achieved Collaborate as the highest level of engagement (n = 73) and 95% (n = 18) of studies that achieved Empower as the highest level of engagement (n = 19).
A post-hoc subgroup analysis of studies where the corresponding author was based in Canada, United Kingdom and United States compared to studies where corresponding authors were based elsewhere found no significant difference in reporting patient partner financial compensation ( χ 2 =0.669, p = 0.41).

Benefits, challenges, barriers and enablers of financial compensation
A total of 32 studies (10%) reported benefits, challenges, barriers or enablers of financial compensation.The most common themes indicating benefits of financially compensating patient partners were "support patient partner participation" and "facilitate long term engagement across the research project", since offering financial compensation can enable patient partners to allocate more time to the research project (e.g., attending more team meetings) (Table 5).One identified theme indicating a challenge to patient partner financial compensation was "financial payments can jeopardize disability or social security payments or impact income tax rates" since financial compensation can impact other income sources.Two themes indicating common barriers to offering financial compensation were "budget constraints" or "lack of funding for the study" and "lack of an institutional policy or guidance document" to inform compensation strategies.

Discussion
We conducted this systematic review to enhance our understanding of how patient partner recognition and compensation practices are reported, with the aim of providing valuable support to the research community in making informed decisions and formulating policies regarding patient compensation.We found that, among studies citing the GRIPP or GRIPP2 reporting guidelines, the majority of studies involving patients in research report non-financial compensation, while only a minority report financial compensation for patients.The most common reported methods of non-financial compensation were informal acknowledgement and co-authorship.The level of reported co-authorship was much higher than levels reported in the literature, and was consistent with the highest levels of co-authorship reported in this journal [41].Indeed, a review of systematic reviews published between 2011 and 2020 identified only 37 reviews that included a patient partner co-author [42].Our results are, however, in line with previous research that found that acknowledgement was more common than co-authorship, even within the field of participatory research [43].Although non-financial compensation (e.g.authorship or acknowledgements) was reported more frequently than financial compensation, we would also note drawbacks and potential threats to this approach.For instance, while there are academic career benefits from co-authorship for research team members, patient partners engage in research for different reasons and may not see the benefits or disadvantages of authorship in the same way.In some instances, coauthorship may even be refused by patient partners with lived experience of a stigmatized condition [44].
In terms of financial compensation, we identified substantial variation in the monetary value assigned, with reported compensation rates ranging from $12 to $42 USD per hour and $31 to $94 USD for attendance at a half-day meeting.We also found an association between Facilitates patient partner participation in research activities across the research project and supports long term engagement 7 Tangible method to demonstrate patient partner appreciation and 5 Supports a sense of equality among team members 4 Financial payments can jeopardize disability or social security payments or impact income tax rates (United Kingdom, Netherlands) 3 Budget constraints or the research project did not receive funding 6 Lack of an institutional policy or guidance document 6 Failing to consider the cost of patient engagement at the study design or funding application phase 2 Sufficient resources and funding 6 Institutional and financial support at the pre-funding stage to support engagement at project onset 3 the reported level of engagement (e.g., Consult, Collaborate, or Empower) and the reporting of financial compensation [35].While we were unable to examine the extent to which the level of engagement was associated with the compensation rates reported, this would be consistent with recommendations from various compensation guidance documents that suggest different compensation rates based on the roles of patient partners in the research project [16,18,[45][46][47].
Among the studies that did report financial compensation, researchers identified two key benefits: fostering long-term patient engagement in research and serving as a tangible means to express appreciation for patient partners' contributions.Moreover, barriers reported included "budget constraints" or "lack of funding for the study".This is consistent with our subgroup analysis findings that suggest that studies reporting receipt of funding were significantly more likely to report financial compensation of patient partners.Notably, 12% of studies that received funding explicitly reported funding to support patient engagement.
While offering financial compensation to patient partners can have a positive impact on their engagement and is encouraged by most patient-oriented organizations, our review also identified potential barriers and challenges in implementing such compensation.A key barrier we identified is the lack of institutional policies and guidance, which limits research teams' ability to offer financial compensation to patient partners.This finding aligns with the barriers identified by individuals who have experience as patient partners in research.In their work, Richards et al. emphasized the crucial role of institutions in supporting patient partner compensation [48], particularly in developing or modifying existing contractual agreements to accommodate patient partnerships and logistics of processing payments.Therefore, it is important for institutions to adopt compensation guidelines and establish effective payment procedures, which can assist researchers in offering financial compensation to patient partners.
When developing a compensation strategy it is important to consider potential threats of financial compensation.Indeed, two studies in our review reported that they deliberately did not offer financial compensation to ensure patient partners were free to express their thoughts without any pressures associated with receiving payments.Keeping financial compensation at a level that reflects appreciation and is approved by patient partners may address this challenge.We also identified "jeopardization of disability or social security payments" as a significant risk of offering financial compensation, which further highlights the importance of considering patient partner preferences and circumstances.By carefully considering these benefits and threats of financial and nonfinancial compensation, researchers and patient partners can co-develop a compensation strategy that appropriately balances recognition, respect for autonomy, and potential threats associated with financial compensation.
Finally, we would suggest that it is imperative that researchers are transparent in reporting all aspects of their health research [49,50] and reporting important details of patient engagement in research should be treated as no less important.Determining the essential patient engagement compensation elements to report, including financial aspects, requires further evaluation to incentivize reporting of patient partner compensation.

Limitations of the study
Our systematic review has certain limitations that should be acknowledged.First, our search strategy is limited to studies that cited the GRIPP reporting checklists, thus published patient engagement research that did not use the GRIPP checklists were not included.As stated above, it would not be feasible to conduct a broad literature search given the paucity of reporting patient engagement in health research [27].Thus, it is crucial to consider that reporting of compensation practices may be different in studies that did not cite the GRIPP checklist.Second, the majority of included studies were written by researchers, which may introduce bias towards the researcher perspective.It is important to consider the experiences of patient partners themselves to better understand benefits, challenges, barriers and enablers to financial and non-financial compensation.

Conclusions
Our systematic review contributes to an area of patient engagement research where very little evidence exists.We found that non-financial compensation was more commonly reported than financial.Importantly, the details of financial compensation were rarely reported and highly variable although we did observe a signal that an increased level of engagement was associated with offering financial compensation.Our findings also suggest that adequate funding and budget guidance may support researchers in offering financial compensation to patient partners.Our work supports the need for the research community to better report patient engagement activities including patient compensation practices.

4: Discussion
Overall, patient engagement was successful in informing review development and conduct.
Additionally, the research team learned a lot about the patient partner experience with financial compensation and institutions are recognizing patient partners for their expertise through discussions with MS about her unique experiences.It was helpful that MS was familiar with most team members before joining the research team and that members of the team had experience with patient engagement The systematic review was conducted within a year.At the beginning of the project, we co-developed a timeline and budget to reflect the number of hours that MS devoted to the project.In the future, we will refer back to this timeline at the mid-term mark to ensure that the number of hours budgeted for were accurate 5: Reflections Engagement was embedded within the research project and MS was a member of the research team.MS connected the research team with groups of patient partners who were interested in the systematic review findings.In turn, these connections yielded opportunities to connect with patient groups and disseminate review findings to an important stakeholder group.This would not have been possible without MS

Table 1
Patient partner characteristics of studies (n = 316)

Table 2
Patient engagement characteristics of studies (n = 316)

Table 3
Non-financial methods of compensating patient partners (n = 316)Multiple methods of non-financial compensation can be reported in a single study Non-

Table 5
Reported benefits, challenges, barriers and enablers of patient partner financial compensation

GRIPP II short form reporting checklist Section and topic Item
Patient and public involvement in the design of clinical trials: An overview of systematic reviews.Journal of Evaluation in Clinical Practice24, 240-253 (2018).79.Poolman, M. et al.Carer administration of asneeded subcutaneous medication for breakthrough symptoms in people dying at home: The cariad feasibility rct.Health Technology Assessment 24, 1-149 (2020).80. Pomey, M. P. et al.Assessing and promoting partnership between patients and health-care professionals: Co-construction of the CADICEE tool for patients and their relatives.HEALTH EXPECTA-TIONS 24, 1230-1241.81.Pollock, A. et al.Development of the ACTIVE framework to describe stakeholder involvement in systematic reviews.Journal of Health Services Research and Policy 24, 245-255 (2019).82.Pollock, A. et al.Stakeholder involvement in systematic reviews: A scoping review.Systematic Reviews 7, (2018).83.Poland, F., Charlesworth, G., Leung, P. & Birt, L. Embedding patient and public involvement: Managing tacit and explicit expectations.Health Expectations 22, 1231-1239 (2019).84.Poitras, M. E. et al.Decisional needs assessment of patients with complex care needs in primary care.Journal of Evaluation in Clinical Practice 26, 489-502 (2020).85.Ploetner, C. et al.Understanding and improving the experience of claiming social security for mental health problems in the west of Scotland: A participatory social welfare study.Journal of Community Psychology 48, 675-692 (2020).86.Pezaro, S., Pearce, G. & Bailey, E. Childbearing women's experiences of midwives' workplace distress: Patient and public involvement.British Journal of Midwifery 26, 659-669 (2018).87.Patchwood, E. et al.Organising Support for Carers of Stroke Survivors (OSCARSS): a cluster randomised controlled trial with economic evaluation.BMJ Open 11, (2021).88.Paskins, Z. et al.Quality and effectiveness of osteoporosis treatment decision aids: a systematic review and environmental scan.OSTEOPOROSIS INTERNATIONAL 31, 1837-1851.89.Parslow, R. M. et al.Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking.Quality of Life Research 29, 1169-1181 (2020).90.Parr, J. et al.Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: The feeds mixedmethods study.Health Technology Assessment 25, 1-208 (2021).91.Parkash, V. et al.Assessing public perception of a sand fly biting study on the pathway to a controlled human infection model for cutaneous leishma-niasis.Research Involvement and Engagement 7, (2021).92.Pandya-Wood, R., Barron, D. S. & Elliott, J.A framework for public involvement at the design stage of NHS health and social care research: Time to develop ethically conscious standards.Research Involvement and Engagement 3, (2017).93.Østerås, N. et al.Improving osteoarthritis management in primary healthcare: results from a quasiexperimental study.BMC Musculoskeletal Disorders 22, (2021).94.Ogourtsova, T. et al.Patient engagement in an online coaching intervention for parents of children with suspected developmental delays.Developmental Medicine and Child Neurology 63, 668-674 (2021).95.Odgers, H. L. et al.Research priority setting in childhood chronic disease: A systematic review.Archives of Disease in Childhood 103, 942-951 (2018).96.O'Regan, M. et al.Public & patient involvement to guide research in wound care in an Irish context.A round table report.Journal of Tissue Viability 29, 7-11 (2020).97.Nunn, J. S. et al.Involving elderly research participants in the co-design of a future multi-generational cohort study.Research Involvement and Engagement 7, (2021).98. Nunn, J. S., Gwynne, K., Gray, S. & Lacaze, P. Involving people affected by a rare condition in shaping future genomic research.Research Involvement and Engagement 7, (2021).99.Noblet, T. et al.Independent prescribing by advanced physiotherapists for patients with low back pain in primary care: A feasibility trial with an embedded qualitative component.PLOS ONE 15,.100.Nissen, E. R. et al.Patient involvement in the development of a psychosocial cancer rehabilitation intervention: Evaluation of a shared working group with patients and researchers.Research Involvement and Engagement 4, (2018).101.Ní Shé, É. et al.Minding the gap: Identifying values to enable public and patient involvement at the pre-commencement stage of research projects.Research Involvement and Engagement 6, (2020).102.Newburn, M., Scanlon, M., Plachcinski, R. & Macfarlane, A. J. Involving service users in the Birth Timing project, a data linkage study analysing the timing of births and their outcomes.International Journal of Population Data Science 5, (2020).103.Muir, R. et al.Patient involvement in surgical wound care research: A scoping review.International Wound Journal 17, 1462-1482 (2020).
script? (e.g.methods, results, discussion) (a) Type of financial compensation (e.g.honoraria, salary, cash etc.) (b) Amount (rate and total) (c) Payment frequency (e.g.bi-weekly, one-payment etc.) (d) Reported guidelines or policies used to guide financial compensation