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

Aim of the study

The aim of this study was to

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.

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.

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).

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:

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:

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:

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.

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.

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:

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.

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.