Researcher and Funder perspectives on research funders’ support for Public and Patient Involvement in Research (PPI)

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This paper presents the findings of two surveys conducted by the Health Research Board (HRB) to explore how funders can support PPI and to learn about practices of other national funders. Methods Two online surveys were conducted. Survey 1 targeted researchers, asking how Irish research funders should support PPI. Results were compared to a similar survey run in 2016. Survey 2 explored Irish research funders’ strategies, practices and supports to enhance public and citizen engagement and involvement in research. Results 218 complete responses were submitted to Survey 1. Eighty one percent of respondents always or sometimes involve the public or patients in their research, and 92 percent of these were satisfied with the experience. Benefits and barriers were similar to those reported elsewhere. Two thirds of respondents rated their PPI knowledge as good or very good; however, research participation and research outreach activities were classed as PPI activity by some. Key actions by funders to support PPI were seen in the areas of funding, awareness and training. PPI Ignite Network offices and peers were key sources of learning. Eight Irish funders responded to Survey 2. All have adopted a range of strategies and supports for citizen engagement in research, both as funder-led activities and within research they fund. The HRB remains the only public funder in Ireland with explicit emphasis on PPI. Conclusion While the first-hand experience of PPI amongst researchers has grown, the need to increase knowledge and address barriers continues. Most funders deploy strategies, practices and supports for citizen engagement in research, and some are considering strengthening their approach to shared decision making. 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HRB Open Res 2025, 8 :97 ( https://doi.org/10.12688/hrbopenres.14178.1 ) NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article. Close Copy Citation Details Export Export Citation Sciwheel EndNote Ref. Manager Bibtex ProCite Sente EXPORT Select a format first Track Share ▬ ✚ Research Article Researcher and Funder perspectives on research funders’ support for Public and Patient Involvement in Research (PPI) [version 1; peer review: awaiting peer review] Chiara Mizzoni 1 , Sara Lord https://orcid.org/0009-0004-2027-5615 1 , Aoife Cahill 1 , Anne Cody https://orcid.org/0000-0002-3444-8896 1 Chiara Mizzoni 1 , Sara Lord https://orcid.org/0009-0004-2027-5615 1 , Aoife Cahill 1 , Anne Cody https://orcid.org/0000-0002-3444-8896 1 PUBLISHED 03 Sep 2025 Author details Author details 1 Health Research Board, Dublin, Ireland Chiara Mizzoni Roles: Formal Analysis, Methodology, Visualization, Writing – Original Draft Preparation Sara Lord Roles: Writing – Original Draft Preparation, Writing – Review & Editing Aoife Cahill Roles: Conceptualization, Methodology, Project Administration, Writing – Review & Editing Anne Cody Roles: Conceptualization, Methodology, Project Administration, Writing – Review & Editing OPEN PEER REVIEW REVIEWER STATUS AWAITING PEER REVIEW This article is included in the Public and Patient Involvement collection. Abstract Background Public and Patient Involvement (PPI) means involvement in the planning and doing of research from start to finish and help tell the public about the results. This paper presents the findings of two surveys conducted by the Health Research Board (HRB) to explore how funders can support PPI and to learn about practices of other national funders. Methods Two online surveys were conducted. Survey 1 targeted researchers, asking how Irish research funders should support PPI. Results were compared to a similar survey run in 2016. Survey 2 explored Irish research funders’ strategies, practices and supports to enhance public and citizen engagement and involvement in research. Results 218 complete responses were submitted to Survey 1. Eighty one percent of respondents always or sometimes involve the public or patients in their research, and 92 percent of these were satisfied with the experience. Benefits and barriers were similar to those reported elsewhere. Two thirds of respondents rated their PPI knowledge as good or very good; however, research participation and research outreach activities were classed as PPI activity by some. Key actions by funders to support PPI were seen in the areas of funding, awareness and training. PPI Ignite Network offices and peers were key sources of learning. Eight Irish funders responded to Survey 2. All have adopted a range of strategies and supports for citizen engagement in research, both as funder-led activities and within research they fund. The HRB remains the only public funder in Ireland with explicit emphasis on PPI. Conclusion While the first-hand experience of PPI amongst researchers has grown, the need to increase knowledge and address barriers continues. Most funders deploy strategies, practices and supports for citizen engagement in research, and some are considering strengthening their approach to shared decision making. READ ALL READ LESS Keywords Public and Patient Involvement, Public and Citizen Involvement, Public involvement, Engaged Research, Research Funding, Research Practise, Health Research Corresponding Author(s) Aoife Cahill ( [email protected] ) Close Corresponding author: Aoife Cahill Competing interests: No competing interests were disclosed. Grant information: The author(s) declared that no grants were involved in supporting this work. Copyright: © 2025 Mizzoni C et al . This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. How to cite: Mizzoni C, Lord S, Cahill A and Cody A. Researcher and Funder perspectives on research funders’ support for Public and Patient Involvement in Research (PPI) [version 1; peer review: awaiting peer review] . HRB Open Res 2025, 8 :97 ( https://doi.org/10.12688/hrbopenres.14178.1 ) First published: 03 Sep 2025, 8 :97 ( https://doi.org/10.12688/hrbopenres.14178.1 ) Latest published: 03 Sep 2025, 8 :97 ( https://doi.org/10.12688/hrbopenres.14178.1 ) Introduction Public and Patient Involvement (PPI) holds a significant place in health research. This means that the public and patients are involved in planning and doing research from start to finish and help tell the public about the results of research ( National PPI Ignite Network, 2021 ). The Health Research Board (HRB) has been strategically committed to PPI since 2016. The current strategy (2021–2025) commits to involving the public, patients, and carers in HRB-funded research to ensure that it is relevant and usable and can catalyse cultural change in the research system. In 2016 the HRB surveyed researchers and the public, asking how the organisation could advance PPI in Ireland. Based on the findings, the HRB prioritised activities and delivered the following supports: Five PPI Ignite Awards , co-funded by the HRB and the Irish Research Council (IRC), supported universities to build capacity for high quality PPI and catalyse culture change The introduction of public review of our grant applications alongside the scientific review as part of making funding decision Highlighting PPI in all our funding schemes and guiding applicants to include budget for PPI activities within awards Actively building awareness for PPI in talks and presentation, in our written materials and on the HRB website. More recently, the PPI Ignite Network launched in March 2021. The Network grew out of the work of the PPI Ignite grants, bringing together seven higher education institutions, ten national partners and 53 local partners on an all-island basis. This systemic approach provides a coherent voice for PPI in Ireland and continues the path of culture change. Aim of the study The aim of this study was to 1. Conduct a survey to assess the level of PPI activity and understanding among researchers in Ireland, to compare this to survey results from 2016 and to determine what researchers think funders can do (or do more of) to support PPI. 2. Conduct a survey of other research funders in Ireland to learn about strategies, practices or supports they have in place to support citizen/public engagement or involvement in research. Methods The HRB conducted two follow up surveys in 2021. These were: 1. Survey for researchers: How should Irish research funders support public, and patient involvement in research? (Survey 1). 2. Survey for Irish Research Funders: Strategies, practices and supports to enhance public/citizen involvement. (Survey 2). Survey design Both cross-sectional surveys consisted of structured and open questions, hosted on the online survey platform Smart Survey . Survey 1 used the 2016 survey questions as a starting point. Where appropriate questions were kept unchanged to allow for comparison between the two surveys, however some questions were updated to reflect the changed landscape. The 2021 survey also includes a new question to gauge researcher understanding of PPI, an area where some confusion was obvious from free text responses in 2016. Survey 1 consisted of 11 questions in total. Survey 2 asked research funders about citizen/public involvement in recognition of the fact that most funders surveyed do not focus on heath research, and therefore may not use the term PPI. The survey also gathered information on supports provided to enhance public engagement (e.g., science outreach, public conversations on topics relevant to science). Findings about science outreach from survey 2 are not included here. It asked about supports in place rather than about aspirations. Sampling A non-probability and purposeful sampling strategy was applied, based on internal knowledge and expertise. For Survey 1 the sampling frame was researchers and research managers in Ireland. To achieve reach, several channels were used to contact potential participants and direct them to the publicly accessible survey. This was not limited to health researchers, although given the sampling strategy these will be strongly represented. An email including the survey link was sent to all HRB grant holders, the Research Offices within organisations funded by the HRB, and research contacts of the National Health Information Systems in the HRB. External groups and organisations asked to disseminate the invitation included the PPI Ignite Network, other funding agencies, Health Research Charities Ireland ( HRCI ), The Irish Platform for Patient Organisations, Science and Industry ( IPPOSI ), Campus Engage , the Health Service Executive R&D office , research infrastructures not funded by the HRB, and the Irish Pharmaceutical Healthcare Association (IPHA). The invitation was also shared via HRB social media platforms including Twitter (now X) and LinkedIn. Survey 2 was targeted at the nine biggest Irish public research funders based on volume of funding, and an Irish umbrella body for charities involved in health research. Recipients within these organisations were in strategic positions and mostly known directly by HRB staff. Some were identified from website information. Recipients were asked to share the invitation with an appropriate colleague if they were not the right conduit. Data analysis Quantitative survey data was analysed using descriptive statistics. Free text data was analysed for themes. Responses that only came up once and did not relate to an identified themes or question were not included in the analysis. The key PPI-related findings are detailed in the Results sections. Research ethics In both surveys, HRB contact details were provided for prospective respondents who wished to pose questions before deciding on participation or to comment upon completion of the survey. Survey 1 responses were submitted anonymously, and no personal data was collected. Participants provided written consent to the use of comments in survey outputs before they could access survey questions. For Survey 2, respondents provided written consent to provide their names and contact details to allow sharing of the survey outputs before they could access the survey questions. Respondents are not identified in this paper. Results Survey 1 In total, 218 fully completed responses were submitted to Survey 1: How should Irish research funders support public, and patient involvement in research? Self-description Most survey respondents (67 percent) described themselves as a researcher in an academic setting . A further 10 percent self-identified as a researcher in a health or social care setting . Seven percent of respondents described themselves as a research manager or coordinator for a specific programme/infrastructure and 5 percent as a research manager at school or institutional level . Just one person described themselves as a researcher in an industry setting . The remaining 11 percent of respondents selected other and in the free text box input descriptions such as researcher in an NGO or as working within research support and coordination . Experience of PPI Respondents were asked to describe their level of experience with involving members of the public or patients in the design or delivery of their research. Thirty nine percent of respondents stated that they always involved members of the public or patients in some aspects of their research. Forty two percent of respondents stated that they sometimes involved members of the public or patients in one or two aspects of their research, while 19 percent of respondents have not yet involved members of the public or patients in their research. Of those respondents who do have PPI experience, almost half (49 percent) were very satisfised with that experience; a further 43 percent were somewhat satisfied and 8 percent were either somewhat dissatisfied or very dissatisfied with their overall experience of PPI. Survey respondents were then asked to explain in free text why they rated their experience as they did. Responses were analysed and grouped together by overall sentiment (positive or negative) and then by theme ( Table 1 ). Table 1. Positive and negative responses toward PPI experience, grouped by theme in descending order of frequency. This table categorizes respondent feedback on their experiences with public and patient involvement (PPI), highlighting both positive and negative themes. Themes are ranked by frequency of mention. Positive responses grouped by theme in order of frequency Frequency (number) Negative responses grouped by theme in order of frequency Frequency New & valuable insight and input . New understanding of lived experience and of differing priorities. Increased researcher PPI knowledge with every encounter. Essential for product development and design concept to define end user requirements 19 Too labour and resource intensive, hampered by time constraints. Tight application deadlines impede PPI execution especially upskilling of participants, hosting meetings, and allowing sufficient input into research questions. Difficulty in maintaining ongoing engagement which requires labour and time 20 Strong, positive engagement from PPI contributors . Reduced researcher error, improved patient resources and materials, improved publication and research dissemination, co-productive process and empowered patients. 18 Recruitment challenges and participation bias . Difficulties with regular access to PPI participants, lack of diversity among willing PPI contributors. Volunteer PPI groups are more engaged and informed and therefore less representative of the general population. 16 Improved research approach Ranging from study design, recruitment, data collection, data analysis, to interpretation of research results. In some instances, more successful studies were attributed to PPI. 16 Insufficient budget to cover PPI costs and reimbursement, particularly at research design stage. PPI work involved at the pre-commencement stage is unsupported. 14 Improved overall quality, credibility, outcome, or impact of the research 11 Poor support from research performing institutions , with difficulty locating definitive guidance on PPI implementation and more PPI training for researchers required including at undergrad level. PPI work is unrecognised in career progression for researchers. 9 Support and input into shaping of current or future research questions. 7 PPI not relevant or not feasible as some research areas do not translate easily to incorporation of PPI. Not found to be practical, useful or outside the scope of research. Unable to translate new knowledge to future research practices or strategy in a meaningful way. 7 Confusion around GDPR compliance and or data protection issues. 5 Lack of meaningful input from PPI contributors: Mixed experience of PPI and its outcomes. Not enough PPI contributor education and training. 4 Sometimes challenging to reconcile research aims with expectations of patients. 2 Understanding of PPI Most respondents (66 percent) rated their understanding as either very good (28 percent) or good (38 percent). A quarter of respondents rated their understanding as reasonable (25 percent). Eight percent and 1 percent, respectively, rated their understanding as very limited or no understanding . Respondents were then provided with a list of sample activities including: Public engagement regarding research, Enhancing participation in research, or PPI across the research cycle as defined by the PPI Ignite Network and used by the HRB Some activities were recognised as PPI by over 95 percent of respondents, including Inviting members of the public, patients or carers to sit on a study/research group steering committee and working with patients and other stakeholders to set research priorities ( Figure 1 ). Figure 1. Respondents beliefs on activities that constitute PPI. This figure illustrates the range of activities respondents believe represents meaningful public and patient involvement (PPI). Fourty seven percent thought inviting the public to attend information evenings to raise awareness about research was PPI, as well as 27 percent indicating visiting schools to make research and science interesting for school students . Both are seen by the HRB as science outreach. Fourteen percent and 17 percent respectively thought recruiting study participants to take part in a study or qualitative interviews, where researchers interview study participants was PPI, when it describes research participation and data collection. Respondents who rated their PPI knowledge as good or very good did not display significantly different ratings in this question compared to the overall sample. Those who provided answers inconsistent with the PPI definition under one question often also provided other responses which were inconsistent. Barriers to PPI Sixteen percent of respondents stated that they had not encountered any barriers to PPI work , with the remaining 84 percent choosing from a range of pre-populated options or adding free text to describe barriers they have encountered. Almost a quarter (22 percent) identified a lack of funding as the most significant barrier to PPI. A further 12 percent felt not knowing how to find and to approach potential PPI contributors and groups was the most significant barrier. Furthermore, 8 percent were concerned about time constraints , 7 percent about the lack of recognition for PPI work ; 4 percent felt they didn’t know where to start and 2 percent were worried that PPI would mean changing their project too much . Most survey respondents chose to add their own perspective to describe specific barriers to PPI implementation by selecting other (29 percent) ( Figure 2 ). Figure 2. Barriers to PPI. This figure presents the key barriers to public and patient involvement (PPI) in research as identified by respondents. Some barriers identified under Other overlapped with the options provided in the survey. Additional barriers which did not overlap with the options included: Renumeration restrictions and administrative barriers including for payment processes Lack of meaningful input by PPI contributors Difficultly in achieving diversity Lack of training Lack of national payment standards Resistance/pushback from more senior colleagues Some of these overlap with the options given. Despite these various challenges, there was continued interest of researchers in developing PPI in their own research; over half (55 percent) stated they were already including PPI in their research and will continue to do so, while a further 28 percent believed it could benefit their research and they plan to develop it . A further 14 percent of survey respondents would consider PPI with further support and 3 percent did not see the benefits of doing so . Learning opportunities and enablers for PPI Most researchers stated that they found learning opportunities and enablers for PPI from PPI Ignite Programme offices (53 percent) and colleagues (53 percent). This was followed by community partners (35 percent), national events (32 percent), international materials or conferences (30 percent), research offices in Higher Education Institutions (23 percent) ; and the HRB Open Research PPI collection (15 percent) . Sixteen percent selected Other Within the free text ‘Other’ box, some examples which were provided included: Existing relationships with PPI organisations Patient lectures Pre-existing PPI panels and established patient networks Organisations like the HRCI , IPPOSI and EUPATI who foster PPI Academic literature on PPI including the Research Involvement and Engagement Journal Hospital staff Previous work experience in other industries/sectors It was further noted by one commentator that while local PPI offices are valuable for full-time academics, academic clinicians with large clinical responsibilities might be unable to attend certain events. The role of funders in supporting PPI Respondents were asked what Irish funders should do to encourage and further develop PPI in Ireland. Respondents could select as many answers as they wished and add free text. Table 2 summarises the responses by order of frequency they were selected. Funding-related issues featured at the top of the list, as did awareness raising and working with research institutions to provide training, resources and practical help to researchers. Table 3 sets out suggestions made under ‘other’, and Table 4 sets out the additional comments. Table 2. Responses by frequency on what funders should do to encourage and further develop PPI. This table presents suggestions provided by respondents regarding funders’ roles in promoting PPI. Responses are organized by frequency selected. Activity Response percent Ensure that funding for PPI activities is included in award budgets 80 Enable funding for PPI input when preparing grant applications 79 Strengthen awareness of what PPI can offer for researchers (e.g. by showcasing examples, providing materials, holding events etc.) 72 Work with the research institutions to provide training, resources and practical help to researchers 65 Encourage and support the development of simpler financial and administrative processes in research organisations to facilitate PPI 64 Help matchmaking between researchers and PPI contributors 64 Bring together patients, carers and researchers to identify priorities for research on PPI (as opposed to research involving PPI) 59 Provide strong guidance about the importance of PPI in funding calls and ask for PPI plans for the project in the application 58 Develop a funding scheme supporting research on PPI (as opposed to research involving PPI), for example to develop methodology or assess the impact of PPI 55 Follow up on the delivery of PPI plans set out in applications 51 Network research institutions and PPI contributors to create a shared voice for PPI in Ireland, improving the quality of PPI activities and addressing common challenges 50 Ensure PPI processes are aligned with the principles of Equality, Diversity and Inclusion 49 Support and develop PPI involvement in the research publication process 49 Include an assessment of PPI plans by members of the public when selecting which applications are funded 40 Other (please specify): 20 Table 3. What funders should do to encourage and further develop PPI: ‘Other’ category free text. This table contains free- text responses submitted under the ‘Other’ category to the question on what funders should do to encourage and further develop PPI. Some suggestions made under ‘Other’ overlapped with the options provided in the survey. Additional suggestions put forward which were not overlapping with the options included: • Extended timelines for the preparation of research funding applications to allow for PPI inclusion • Training provided to public reviewers, delivered by PPI contributors • Educational outreach for PPI organisations • Fund patient organisations so that they can collaborate with researchers • Institutional embedding of PPI in promotion and tenure specifically • Support for public outreach measures • Support PPI involvement in relation to research impact on policy and practice Table 4. What funders should do to encourage and further develop PPI: Additional commentary. This table includes additional suggestions made on what funders should do to encourage and further develop PPI. The comments received largely repeated responses already made; additional points are grouped below: Awareness and understanding • Examples of successful PPI engagement in research projects should be highlighted and appropriately acknowledged • Showcase of different PPI strategies would help to better see how it can integrate with my research • HRB should provide information/data on why PPI should be valued by an institution to support buy in • Difficult to assess how to integrate PPI into projects which use secondary data exclusively Resourcing • Development of a cadre of experienced PPI personnel • Access to a PPI advisor and preferably PPI panels should be made available • Early career researchers need more direct support how to do PPI well • Investment needed in online platforms where patients and researchers can work together Barriers • Those in universities and large institutions with PPI panels and advisory groups have a substantial advantage when it comes to PPI inclusion. For smaller organisations it could become a substantial barrier to accessing funding • Hard for researchers who are not university staff to adopt a PPI approach • Risk of lobby groups exerting undue influence that is not in the true interest of health research • The HRB PPI review process is frustrating due to wide variation of perspectives across the PPI reviewers Results survey 2 Ten public Irish funders and an umbrella organisation for research funding charities were invited to take part in survey 2: HRB Survey for Research Funders: Strategies, practices and supports to enhance public/citizen involvement. Eight completed responses were received. Those eight organisations were: Department of Agriculture, Food and the Marine ( DAFM ) Department of Children, Equality, Disability, Integration and Youth ( DCYA ) Environmental Protection Agency ( EPA ) Health Research Board ( HRB ) Health Research Charities Ireland ( HRCI ) (on behalf of their member charities) Irish Research Council ( IRC ) Marine Institute Science Foundation Ireland ( SFI ) Public input into funder strategy and research Survey 2 begun by exploring funding bodies science outreach activities. These findings are not reported in this paper as the focus here is PPI and citizen involvement. The survey then asked four yes or no questions concerning different aspects of public input into strategy and research. Seven respondents (88 percent) request input from the public into strategy or priority setting. Seven respondents (88 percent) work with research institutions to provide training, resources, and practical help to foster different aspects of researcher engagement with the public and society. Seven respondents (88 percent) stated that they strengthen awareness of benefits of public input into research such as by showcasing examples, providing materials, and holding events. Six funders (75 percent) enable funding for input from public and societal sources when preparing grant applications. Non-researchers as co-applicants or collaborators in funding applications Funders were asked if they allow non-researchers as co-applicants or collaborators in funding applications. Seven funders said yes. They were also asked to outline any limitations on who can be a co-applicant or collaborator. This varies by funder: HRCI members, HRB and DAFM have no limitations. For DAFM eligible research-performing organisations will be funded while other partners can participate on a self-funding basis. Limitations for non-researchers as co-applicants or collaborators by other funders generally depend on the research programme/tender and often are aimed at industry. Research applicants experience involving the public in research Three funders ask grant applicants to describe their experience involving the public in research as part of their CV. Six funders ask applicants to describe input from the public at any stage of the research cycle and eight say that they follow up on the delivery of public involvement plans set out in applications. Funding for public involvement in awards Six funders report providing funding for activities to involve the public in an award. The various funding mechanisms are highlighted in Table 5 . Table 5. Funding mechanisms for Public Involvement as described by funders. This table summarizes descriptions of existing funding mechanisms that support public involvement in research, as reported by funder respondents. Funder Funding mechanisms for Public Involvement Marine Institute • Included in award budgets • Networking Initiative DAFM • Included in award budgets (workshops, public engagement, or dissemination events costs) SFI • Funding programme dependent HRCI • Included in award budgets (some members) • PPI budgeting encouraged through the Joint Funding Scheme with the HRB. • Benefit-in-kind support provided by members (through undertaking or facilitating PPI for their research partners). DCYA • Dedicated awards HRB • Included in award budgets • Co-funds (with the IRC) the PPI Ignite National Network which drives the quality and embedding of PPI into the Irish research landscape. IRC • Co-funds (with HRB) the PPI Ignite National Network which drives the quality and embedding of PPI into the Irish research landscape. EPA • Can be included in award budget Seven of the eight funders have funding or other mechanisms to support the dissemination of outputs of specific research projects to a general audience or relevant groups. Input from the public into the grant selection process Two funders allow for input from the public into their grant selection process. The HRCI member charities have patients, parents, and carers (as appropriate) on their grant selection committees and often on their Boards, who give final approval to funding decisions. Many charities also involve PPI contributors as reviewers in the selection process. The HRB includes a public review stage for most of their funding schemes, where public reviewers assess the PPI component of applications and these reviews are provided as an input to the deliberations of the scientific selection panel. In some instances, PPI reviewers participate in the selection panel along with the scientific reviewers, and engage in the discussion, assessment and final scores. ln all instances, PPI reviews are provided as part of the wider feedback to the applicants. Infrastructures and activities that support other actors in the research landscape to work with the public Seven funders fund or provide infrastructures and or activities that support other actors in the research landscape to work with the public. The Marine Institute fund a marine exhibit at the Galway City Museum and hosts building tours provided for culture night. SFI fund supports for science communication, journalism and broadcast projects. They have supported art theatre installations, training and workshops, access to labs and initiatives such as " Creating our Future ", science week , maths week and tech week . The EPA works with the research institutions to provide training, resources and practical help on engaged research to researchers, via communication and knowledge transfer training. They also fund a series of reports with targeted and tailored stakeholder guidelines and toolkits to facilitate the science policy interface. They strengthen awareness of benefits of public input into research such as via EPA Climate change lecture series , and other information events open to the public. The IRC is also involved in the ‘ Creating our Future ’ initiative designed to engage researchers and the public on what the latter sees as important topics for research and co-fund the PPI Ignite Network of Ireland. The DCYA also support the ‘ Creating our Future ’ initiative. HRCI member charities fund research that is a priority to the public communities they represent. Many member organisations were started by or heavily involve people affected by health conditions and all are focused on improving lives through research. HRCI supports its members through a Shared Learning Group as well as a PPI toolkit and have seen their PPI capabilities grow over the years. HRCI are a national partner on the PPI Ignite Network of Ireland and are co-leading one of its work packages. The HRB support HRCI and IPPOSI through core grants. Both organisations place a strong emphasis on PPI. HRB co-fund research with HRCI member organisations in a Joint Funding Scheme , with HRB covering 50 percent of the costs (or 75 percent for small charities). HRB jointly with IRC are funding of the National PPI Ignite Network which includes 7 universities, 10 national partners and 53 local partners. Current level of working with the public The survey concludes by asking funders how they view their current level of working with the public. Seven funders were looking to extend their activities and one funder feels their level is about right, while no survey respondents have plans to reduce or cease current activities. The EPA believes extending their role in the area of working with the public in a proactive manner can further advance their key role of advocacy. DAFM believes there is likely to be further industry and citizen engagement on their part arising from recommendations in the Food Vision 2030 Strategy . SFI would like to expand engaged research activity. The IRC are open to building on what they do, and particularly working with other stakeholders and funders. The HRCI believe there is still opportunity for increasing the quality and impact of PPI despite currently dedicating very significant resources to it. The DCYA are actively looking at better ways to disseminate their research to the public. The HRB is keen to understand the impact of the actions already taken and to understand gaps or areas for improvement. Discussion Survey 1 The main limitation to interpreting the results from Survey 1 is that the sample was not representative. Respondent were self-selected and likely included some researchers and research managers from areas other than health with less familiarity with the term and practice of PPI. However, those with an interest in PPI may have been more likely to respond. In addition, perspectives of the public were not sought on this occasion as a national campaign (“Creating our Future”) asking the public about their research priorities was active at the same time. Overall, the findings describe a snapshot rather than necessarily the full picture. Where possible this discussion will include a comparison between 2016 and 2021 survey results. The number of researchers respondents was similar in both surveys (226 in 2016 and 218 in 2021), but the individuals responding may have been different. PPI activity The percentage of respondents who say that they always or sometimes involve members of the public in the design or delivery of their research increased from 66 percent in the 2016 survey to 81 percent. One of the key outcomes of the 2016 survey was a need to increase awareness and understanding of PPI, and the HRB and others have worked towards this since then. The increase in activity suggests that awareness of PPI has increased. The 2021 survey indicated that 92 percent of respondents were somewhat or very satisfied with previous PPI experiences. This is similar to the satisfaction reported by researchers in 2016 (89 percent). One of the key benefits that underpins PPI is that patients’ lived experience adds value when it comes to shaping research, which has been shown to reduce research waste ( Biggane et al. , 2019 ). In our survey, researchers frequently referenced benefits of PPI such as improving research protocols and adding a different perspective to the analysis and dissemination. The survey suggests that (1) Irish researchers are now more likely to involve PPI contributors, (2) that they feel that this has improved their research approach and (3) the partnership experience has been largely positive. PPI – understanding the term In response to the notable level of responses in 2016 where the understanding of PPI appeared not to be in line with the definition, a question was included in 2021 that could be used to assess the level of understanding. As in 2016, the 2021 survey also started with a definition of PPI. While researchers considered themselves to be knowledgeable on what is meant by PPI, the survey found that there remains some level of confusion on what PPI is, particularly compared to science outreach and dissemination activities, with some respondents also including participation in research projects. Confusion in distinguishing between the process of conducting research, stakeholder engagement and PPI activities continues to be cited in PPI studies elsewhere ( Coulman et al. , 2020 ). In Ireland, the term ‘engaged research’ is used by the higher education institutions as an umbrella term for engagement and involvement activities, including PPI ( Campus Engage ). This might make it harder to develop a clear and consistent understanding of PPI. Meaningful partnership Despite this confusion around the term PPI, the word ‘meaningful' was used repeatedly in the 2016 and 2021 surveys in the free text responses to the question ‘Why did you rate your experience as this?’. As the direct experience of PPI amongst researchers has grown, the continued desire to make this involvement meaningful is an important observation, as highlighted in comments such as this: For the past 2–3 years, we have involved patients and family members in our discussions about the focus of research applications, and included patient co-applicants on our team, who then feed into the ongoing conduct of the project. This has guided the team to more meaningful questions and approaches to data gathering and dissemination and prevented errors due to lack of insight on the part of the research team. The survey does not show how early in the research process PPI contributors came on board. Whilst most researchers confirm they do involve PPI contributors in aspects of their research, it was not asked when during the various stages of the research cycle from prioritising research questions to sharing results. This limitation may be addressed in the future. It is worth noting that many of the responses were positive and also referenced difficulties. In addition, there was a small group of responses which indicated that PPI was not relevant to their research. The HRB asks applicants if they have PPI plans, and if not, why not. Few applications fall into the latter category, and it is up to the review process to establish if the reviewers agree with this statement. In the 2021 responses, lack of funding was considered the most significant barrier to PPI. This was ranked in joint fifth place in 2016, potentially because not enough researchers were doing enough PPI to run into these difficulties. Reimbursement practices in higher education organisations were also not mentioned in 2016, which is likely a sign of more researchers now trying to pay PPI contributors rather than reimbursement becoming harder. This can be seen as a source of inequality, with one researcher suggesting the practice of using of small vouchers is insulting to their contribution. HRB and HRCI members advise grant applicants that compensating PPI contributors is expected, however they are the only funders in Ireland to do so explicitly. Researchers applying to other Irish funders might be unclear about eligibility of these costs, or it might refer to the funding of PPI activities in the preparation of an application. In 2016, researchers stated that sourcing PPI collaborators was the greatest barrier to PPI they had encountered, and this dropped to fourth place in 2021. There is no large-scale matching mechanism in Ireland, only a small programme run by IPPOSI and since 2023 the PPI Opportunities Noticeboard maintained by the PPI Ignite Network. Researchers often look for a relevant charity or community group, but this is not available for all areas of health research. Under 8 percent of researchers indicated their PPI experience was not positive. Low satisfaction was linked to PPI being considered too labour and resource intensive, hampered by time constraints, insufficient budget and challenges accessing contributors. While there are resources available to offer practical advice to help researchers overcome PPI challenges, such as the National PPI Ignite Network , research has shown available resources are not always used ( Bagley et al. , 2016 ). Learning opportunities and enablers for PPI Respondents highlighted learning opportunities as enablers for PPI. The PPI Ignite Programme Offices were funded from 2017 with the aim of helping catalyse culture change in research institutions. Half of all respondents referencing them as a resource that enables learning around PPI suggests they are meeting that aim. Conversations with colleagues were key to learning about PPI for over half the respondents. This might indicate a shift in institutional PPI capacity and capability as well as research culture since 2016. The role of funders in supporting PPI While the central role of funders in supporting PPI remains undisputed, there have been some changes to what activities researchers prioritised in relation to what they believe Irish funders should do to encourage and further develop PPI in Ireland. Researchers in 2021 prioritised funding for PPI as the most important way a funder could facilitate PPI, both in the preparation of funding applications and within funded projects. They also highlighted the need for simpler administrative processes in research organisations to access PPI funding granted. This aligns with the two most important barriers identified, lack of funding and inadequate administrative payment procedures. It is worth noting that researchers had ranked specific funding for PPI as sixth out of eight support options in 2016. Together, these findings also seem to reflect the new reality that researchers have more PPI experience and have actually encountered such barriers. In 2016, practical help and awareness building were identified as top priorities. There still rank relatively highly, at fourth and third rank, respectively. Based on the free text answers, respondents believe funders should continue to facilitate PPI within their standard grants and funding opportunities as well as through some new or dedicated mechanisms. This might be through extended application timelines to allow for PPI inclusion, detailed guidance on budgeting for PPI in grant applications, a PPI relationship development fund so that patient organisations can approach researchers for exploratory pre-application PPI work or by funding patient organisations so that they can collaborate with researchers. Similar to 2016, more than half of the respondents selected matchmaking as an area of medium importance. There is clearly an ongoing need for some mechanism to encourage and develop relationships by connecting researchers and interested members of the public to work together and the PPI Ignite Opportunities Noticeboard will go some way towards this. The ongoing issue around diversity and representation within PPI may also be helped by a matchmaking initiative. As with the 2016 survey the activity ranked the lowest by researchers was the option to ‘Include an assessment of PPI plans by members of the public when selecting which applications are funded’. Almost 40 percent of respondents selected this as something funders should do suggesting some openness to the inclusion of a public review in the selection process. This mechanism has been part of the HRB’s response to the 2016 survey to raise awareness of PPI and to ensure that PPI in HRB grants is not tokenistic, and we continue to see this as an important tool. Scientific reviewers with PPI experience had occasionally commented on PPI aspects of applications before the HRB introduced a public review process. However, without a systematic input from the public, there is a danger of those comments from scientist replicating the attitudes of professionals ‘knowing best’ that PPI aims to overcome ( Freedman, 2002 ; Sloan et al. , 2024 ). Applicants can respond to the public reviews (just like they can for scientific reviews) ahead of the selection panel as an important part of the process. Public and/or patient participation in funding selection processes, particularly for health research, is well established in other countries for example in the UK’s National Institute for Health Research ( NIHR, 2025 ; and Staniszewska et al. , 2018 ), the Canadian Institute for Health Research ( CIHR Framework for Citizen Engagement, 2012 ), the US’ Patient Centred Outcomes Research Institute ( PCORI, 2025 ) and in a variety of Dutch funders ( den Oudendammer et al. , 2019 ). It is not entirely surprising that there was broad support for PPI within the survey yet some reluctance towards the inclusion of public review of PPI plans in the grant selection process. Any additional selection step, regardless of how valuable it is, is likely to greeted this way. The fact that four out of ten respondents felt that public review should be done points towards a growing acceptance. It is a logical part of the grant selection process, particularly for a health research funder. Its continuation should contribute to the normalisation of PPI. Based on the 2016 survey, the HRB put into place new PPI supports and highlighted existing ones. A number of these such as capacity building, funding for PPI in research projects and awareness raising are reflected as important in survey. The current survey has helped the HRB to take stock before planning for the future. Importantly, funders are only one type of actor in the research ecosystem, and other actors will be equally necessary to support PPI. Survey 2 The survey findings give an insight into the Irish landscape on the strategies, practices and supports provided by research funders to enhance public/citizen involvement in 2021. The findings suggest that it is routine for research funders in Ireland to have strategies to enhance public/citizen involvement in the research they fund and in their own practices. Funders’ strategies and supports for public/citizen involvement take many different forms and range from public lectures, workshops, exhibitions right through to theatre installations. Importance of public/citizen involvement Public input into funder strategy and research is frequently requested by funders. Funders appear to be working closely with the research institutions to build capacity amongst researchers to engage with the public and society around research and science. The scope and emphasis of this work from science outreach to PPI varies between funders. Funders are predominantly open to the inclusion of those outside academia in the research they fund with funding being made available for this. Some funders (HRB and HRCI) go so far as to ensure there is public input in their grant selection process. HRB and HRCI remain the only funders to actively encourage the inclusion of members of the public in decision making around identifying research questions, study design and conduct as well as dissemination. The findings would suggest there is an increasing recognition of the importance and benefits of engaging and involving the public to strengthen the relevance of funded research, as well as being accountable for organisational strategies. A number of funders have the ambition to extend their role in this area and build upon what they are currently doing. Survey 1 might provide some input into those deliberations. Conclusions This study explored how Irish research funders should support PPI in research and put this into the context of a similar 2016 survey. A number of indicators have changed since then, implying more researchers actually engaging with PPI and also encountering some of the barriers. It is encouraging that funders are interested in growing their activities around engaged research, including PPI, and Survey 1 may help to direct some of this activity. Some activities highlighted as a gap in survey 1 such as matchmaking might be better delivered by actors other than funders. The research environment is changing in Ireland and internationally. The PPI Ignite Network is co-funded by its seven lead university sites, recognising their responsibility in this space. Research performing organisations clearly have a broad role to play to encourage and reward PPI. The Agreement on Reforming Research Assessment under the Coalition for Advancing Research Assessment (CoARA) signed by most Irish universities emphasises the importance of diverse outputs, practices and activities that maximise the quality and impact of research, which includes PPI. Integration of such work into promotion and tenure decisions would be welcome. The Health Service Executive, the public healthcare system in Ireland responsible for the provision of health and personal social services, regularly involve patients into policy and service development, but have limited activities at this point to support PPI in research. The HSE Action Plan for Health Research 2019 – 2029 references the importance of PPI and is a good foundation to become more active in this space. Last not least, all partners in a piece of research need to consider PPI as a benefit to themselves to really embrace it. To that end the relevance and impact of PPI in different settings and types of research need to be highlighted and showcased in evaluations and case studies. Ethics and consent Ethical approval was not required. For Survey 1 all the data was submitted anonymously, and responses cannot be linked back to specific individuals. No personal data or IP addresses was collected. Participants consented to using comments in resulting survey outputs. For Survey 2, funders were asked to provide their details to allow sharing of the survey outputs. Participants consented to this before they could access the survey questions. Specific respondents are not identified here. Data availability Underlying data Zenodo: Researcher and Funder perspectives on research funders’ support for Public and Patient Involvement in Research (PPI). https://doi.org/10.5281/zenodo.15624079 ( Cody et al. , 2025 ). The study contains the following underlying data: Survey 1 data Survey 2 data Extended data Zenodo: Researcher and Funder perspectives on research funders’ support for Public and Patient Involvement in Research (PPI). https://doi.org/10.5281/zenodo.15624079 ( Cody et al. , 2025 ). The study contains the following extended data: A copy of the Smart survey questionnaire: Survey 1 A copy of the Smart survey questionnaire: Survey 2 Underlying and extended data are available under the terms of the Creative Commons Attribution 4.0 International license (CC-BY 4.0). Acknowledgments We would like to acknowledge the work of all research funders working to enhance public/citizen involvement and thank them for taking the time to complete this survey. We would also like to acknowledge all those in the research community who took the time to complete our survey. Faculty Opinions recommended References Bagley HJ, Short H, Harman NL, et al. : A Patient and Public Involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials - a work in progress. Res Involv Engagem. 2016; 2 : 15. PubMed Abstract | Publisher Full Text | Free Full Text Biggane AM, Olsen M, Williamson PR: PPI in research: a reflection from early stage researchers. Res Involv Engagem. 2019; 5 : 35. PubMed Abstract | Publisher Full Text | Free Full Text Canadian Institutes for Health Research: CIHR’s framework for citizen engagement 2012. Canadian Institutes for Health Research, Ontario, Canada, 2012. Reference Source Cody A, Cahill A, Mizzoni C, et al. : Researcher and Funder perspectives on research funders' support for Public and Patient Involvement in Research (PPI) [Data set]. Zenodo. 2025. http://www.doi.org/10.5281/zenodo.15624078 Coulman KD, Nicholson A, Shaw A, et al. : Understanding and optimising Patient and Public Involvement in trial oversight: an ethnographic study of eight clinical trials. Trials. 2020; 21 (1): 543. PubMed Abstract | Publisher Full Text | Free Full Text den Oudendammer WM, Noordhoek J, Abma-Schouten RY, et al. : Patient participation in research funding: an overview of when, why and how amongst Dutch health funds. Res Involv Engagem. 2019; 5 : 33. PubMed Abstract | Publisher Full Text | Free Full Text Freedman TG: 'The doctor knows best' revisited: physician perspectives. Psychooncology. 2002; 11 (4): 327–35. PubMed Abstract | Publisher Full Text National Institute for Health Research. https://www.nihr.ac.uk/get-involved/read-and-review-documentation and https://www.nihr.ac.uk/get-involved/committees . (accessed 20 February 2025). Patient Centred Outcomes Research Institute (PCORI). (accessed 20 February 2025). Reference Source Sloan M, Andreoli L, Zandi MS, et al. : Attribution of neuropsychiatric symptoms and prioritization of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study. Rheumatology (Oxford). 2024; 63 (12): 3471–3485. PubMed Abstract | Publisher Full Text | Free Full Text Staniszewska S, Denegri S, Matthews R, et al. : Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future. BMJ Open. 2018; 8 (7): e017124. PubMed Abstract | Publisher Full Text | Free Full Text Comments on this article Comments (0) Version 1 VERSION 1 PUBLISHED 03 Sep 2025 ADD YOUR COMMENT Comment Author details Author details 1 Health Research Board, Dublin, Ireland Chiara Mizzoni Roles: Formal Analysis, Methodology, Visualization, Writing – Original Draft Preparation Sara Lord Roles: Writing – Original Draft Preparation, Writing – Review & Editing Aoife Cahill Roles: Conceptualization, Methodology, Project Administration, Writing – Review & Editing Anne Cody Roles: Conceptualization, Methodology, Project Administration, Writing – Review & Editing Competing interests No competing interests were disclosed. Grant information The author(s) declared that no grants were involved in supporting this work. Article Versions (1) version 1 Published: 03 Sep 2025, 8:97 https://doi.org/10.12688/hrbopenres.14178.1 Copyright © 2025 Mizzoni C et al . This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Download Export To Sciwheel Bibtex EndNote ProCite Ref. Manager (RIS) Sente metrics VIEWS $counts.viewCount downloads Citations open_in_new 0 open_in_new 0 open_in_new SEE MORE DETAILS CITE how to cite this article Mizzoni C, Lord S, Cahill A and Cody A. Researcher and Funder perspectives on research funders’ support for Public and Patient Involvement in Research (PPI) [version 1; peer review: awaiting peer review] . 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