From guidance to governance: A perspective review of embedding public and patient involvement within an institutional research ethics committee.

Clarifying whether PPI requires ethical approval

The first initiative addressed the most commonly reported barrier: whether PPI itself requires REC approval. A national working group comprising REC members, PPI contributors, researchers, and PPI coordinators reviewed international approaches and conducted consultation and survey work.

The resulting national statement concluded that PPI activities do not usually require REC approval because contributors are not research participants and do not provide research data.¹ The statement emphasised researcher responsibility to ensure safeguarding, data protection, and duty of care. Consultation showed strong support and demand for clarification, with 197 respondents participating in feedback exercises. The statement provided practical reassurance to researchers and ethics officers and began to distinguish participatory governance from research participation. Importantly, this work reframed ethics: rather than RECs governing PPI, PPI could contribute to ethical governance.

Supporting inclusion of PPI members on RECs

The second initiative explored practicalities related to how PPI contributors could become members of RECs. A national working group developed co-produced guidance for institutional committees. The guidance identified that PPI membership requires readiness across four stages: contemplation, preparation, action, and maintenance.⁶ It emphasised that PPI members bring societal and lived-experience perspectives distinct from traditional lay membership.

Key anticipated barriers included:

The guidance was not intended as a protocol but as a reflective tool enabling committees to assess readiness for inclusion.

Aim of this paper

Following publication of both resources, a PPI coordinator and a PPI contributor joined an Irish Higher Education Institutional REC. After more than one year of membership, reflective narratives were collected. This paper asks:

Did real-world implementation of PPI in an institutional REC align with the expectations created by the national guidance?

Ethics statement

Formal institutional research ethics committee (REC) approval was not required for this article. This is because the paper involves the analysis of personal reflections of the authors on their professional role as members of a REC. The narratives are professional reflections by the authors themselves, rather than data collected from research subjects. Explicit informed consent was obtained from all named individuals to record and transcribe the narratives in line with GDPR regulations.

Study design

This study is a reflexive perspective review informed by experiential data. The experiential data informing this study were generated through structured reflective practice. Two members of a university Research Ethics Committee participated in guided reflective conversations exploring their experiences after more than one year of committee membership. The reflection prompts were designed to elicit participants’ descriptions of their role, expectations, experiences of participation, perceived influence, and suggestions for improvement. The questions broadly followed a reflective learning cycle, encouraging participants to first describe the experience, then examine their feelings and interpretations, before considering implications for future practice.⁷

Data sources

Two narrative reflections were collected from:

The reflections describe experiences of over one year of REC participation. Author ND facilitated the reflection and helped draft the analysis.

The REC meets approximately every two months, reviews institutional ethics policies, and considers emerging ethical issues at an institutional, cross-disciplinary level.

Analysis

Narratives were analysed using interpretive thematic analysis with a reflexive lens. The analysis focused on alignment between anticipated barriers in the national guidance and lived experience.

Contributors are co-authors and discussing their own experiences, and the work is presented as a reflective governance evaluation rather than human participant research. To ensure the credibility of the analysis and the protection of institutional confidentiality, a process of member checking was used. Both ED & KK reviewed the analysed themes and the final manuscript to confirm that the findings accurately reflected their lived experience/perspective of REC membership.

Theme 1: Legitimacy without visible impact

Both individuals felt welcomed and treated equally during meetings. Documents were accessible and members could comment on policies alongside academics. However, both struggled to identify concrete influence on decisions. The coordinator noted uncertainty about whether her presence changed outcomes. Similarly, the contributor stated she felt she was learning more than contributing. This reflects a paradox: inclusion was successful operationally but ambiguous substantively. Rather than changing decisions, PPI appeared to change perspectives. The coordinator described improved ability to explain ethics to researchers, while the contributor reported increased awareness of ethical implications in everyday contexts. Impact manifested through cultural translation rather than voting or decision-making influence.

Theme 2: Learning and cultural translation

Both members described RECs as complex institutional environments requiring extensive acclimatisation. Entering the committee was initially intimidating. Understanding ethics governance required time and familiarity with research processes. Members learned institutional ethics, while the committee gained insight into researcher and public perspectives. The coordinator described acting as a bridge between researchers and ethics reviewers. This bidirectional learning represents an unanticipated benefit: PPI improved the relationship between researchers and governance.

Theme 3: Structural readiness versus relational readiness

The committee was structurally prepared:

These matched the national guidance recommendations. However, relational integration took much longer. Members needed time to understand institutional culture, terminology, and governance processes. One year was insufficient for full confidence or influence. Guidance predicted training needs but underestimated integration time. The committee functioned as a “living system” adapting to emerging issues such as AI. This complexity meant influence depended on experience rather than attendance.

PPI as ethical deliberation rather than representation

Historically, RECs developed from the regulatory ethics tradition following the Nuremberg Code and Declaration of Helsinki, prioritising participant protection and risk minimisation. Their function has often been described as procedural; reviewing protocols, consent forms, and safety measures. However, contemporary bioethics increasingly recognises that ethical review is not only technical but deliberative.

The presence of PPI contributors in this case did not clearly alter decisions but appeared to influence how discussions occurred. This finding aligns with arguments made in PPI ethics scholarship that the value of involvement is not solely instrumental. As discussed by Dorris and MacLoughlin, PPI should be understood as contributing moral knowledge rather than simply experiential commentary.⁵ Ethical judgement requires understanding what harms matter socially, not only clinically.

Similarly, Gradinger distinguishes between instrumental value (improving research quality) and normative value (democratic legitimacy).⁹ Our findings support the normative model. Contributors enhanced ethical reflection, even when measurable outcomes were unclear. This suggests that evaluating PPI in RECs using decision-change metrics is inappropriate; ethical governance relies on deliberative quality rather than observable outputs.

This also clarifies an important conceptual difference between lay membership and PPI membership. Lay members traditionally represent independence from institutional interests. PPI contributors, in contrast, contribute situated experience relevant to research impact and acceptability. The national guidance emphasised this distinction, and the findings confirm its importance. Contributors did not simply provide public accountability; they mediated understanding between research communities and wider society.

Legitimacy, epistemic authority and “moral expertise”

A striking finding was the contributors’ uncertainty about whether they were influencing decisions. This reflects a recognised phenomenon in participatory governance: individuals from outside professional communities often lack perceived epistemic authority.

Bioethics literature describes RECs as “communities of practice” with shared tacit norms.¹⁰ Members learn to recognise acceptable risk, regulatory thresholds, and institutional responsibilities through experience rather than formal training. Entering such a community requires acquiring what Collins and Evans term “interactional expertise” the ability to participate meaningfully in specialist discourse without being a technical expert.¹¹

The study demonstrates that acquiring this expertise takes time. One year of participation was insufficient for members to feel confident influencing deliberations. The guidance anticipated training needs but underestimated this sociological process. Induction can teach regulations, but it cannot rapidly provide institutional fluency.

This finding resonates with the argument advanced by Lee et al. that PPI contributors often hold moral authority but not recognised authority.¹² Their knowledge is ethically relevant but not always treated as expertise. The result is a paradox: RECs invite public perspectives to enhance legitimacy, yet their procedural culture can unintentionally limit contribution.

Rather than indicating failure, this may be inherent to governance bodies. Ethics committees must balance inclusivity with accountability. Consequently, influence occurs gradually as trust develops. The contributors’ experiences suggest that legitimacy is relational rather than formal: equality of speaking opportunity does not immediately translate to equality of influence.¹³

Cultural translation: PPI as a bridge between research and ethics

An unexpected outcome was the bidirectional learning described by both contributors. The coordinator reported improved ability to explain ethical review to researchers, while the public contributor reported greater understanding of research regulation.

This illustrates what Mol, Moser and Pols describe as “translation work” in participatory healthcare. PPI members frequently act as intermediaries across institutional boundaries. In this case, contributors translated:

This bridging function may be one of the most significant benefits of PPI in RECs. Ethical review processes are often perceived by researchers as bureaucratic barriers. Contributors helped reframe them as protective and deliberative processes. The coordinator described moving from viewing ethics review as obstructive to understanding its responsibilities.

This aligns with work by O’Shea et al., who argue that PPI can reduce adversarial relationships between stakeholders by increasing mutual understanding.⁸ Therefore, PPI in governance may influence research culture more broadly than PPI within individual studies.

Structural readiness versus relational readiness

The national guidance proposed institutional readiness steps such as training, accessibility, recruitment processes, and equal participation. The REC examined in this study implemented many of these successfully. Meetings were accessible, materials were shared in advance, and contributors were treated respectfully. However, structural readiness did not equate to full integration. What remained necessary was relational readiness, the development of confidence, shared language, and trust. Implementation science literature helps explain this. According to Normalisation Process Theory,¹⁴ new practices become embedded only when participants understand their role (coherence), feel capable (cognitive participation), integrate into workflows (collective action), and appraise value (reflexive monitoring).

In this study, coherence and cognitive participation took substantial time. Contributors required prolonged exposure before they understood the committee’s implicit functions. This suggests that short-term evaluation of PPI membership will underestimate effectiveness. The findings therefore extend existing PPI frameworks: inclusion is not achieved at the moment of appointment but through gradual socialisation.

Implications for evaluating PPI in ethics committees

The study challenges dominant evaluation approaches in PPI. Most PPI evaluation asks whether involvement changed research design, recruitment, or outcomes. Such metrics assume PPI is an intervention within a project. Governance PPI operates differently. Ethics committees rarely produce measurable outputs beyond approval decisions or policy development. The relevant outcome is quality of ethical reasoning. Therefore, alternative evaluation criteria are needed. Potential indicators include:

This aligns with deliberative democratic theory,¹⁵ which suggests legitimacy arises from inclusive and reasoned discussion rather than majority voting. PPI contributors contribute to legitimacy even when decisions remain unchanged.

Reframing the purpose of PPI in research governance

The original PPI ethics statement clarified that PPI does not usually require REC approval because contributors are not research participants. The implementation described here suggests a further conceptual step: PPI should not be regulated by ethics systems but should help constitute them.

Rather than viewing ethics committees as regulators of research involving the public, this study suggests they should be seen as partnerships with the public. Involving PPI contributors changes the moral basis of ethical review from professional oversight of research participants to collaborative stewardship of research practice. This interpretation aligns with contemporary bioethics shifts toward relational ethics and public accountability. Trust in research depends not only on compliance with standards but on visible public participation in governance.

Limitations of implementation

The contributors also identified capacity challenges, particularly if PPI were introduced into application review panels rather than policy committees. Reviewing individual protocols requires significant time and mentoring, which committees may struggle to provide. This highlights a practical implication: PPI integration may be most feasible initially at governance or policy level rather than high-volume protocol review. Additionally, contributors required prior familiarity with research contexts to participate effectively. This raises equity considerations. If governance PPI depends on research literacy, inclusion risks favouring already-engaged publics. Institutions may need preparatory pathways or peer networks to widen access.

A developmental model of REC PPI

Taken together, the findings suggest a staged model:

Most evaluation frameworks assess stage 1 or 3. This study indicates meaningful impact occurs at stages 4–5 and requires time.

Public and patient involvement statement

This research examines public and patient involvement in research governance. The paper is co-produced with individuals directly involved in the initiative described. The reflective narratives analysed in this paper were written by members of the research team describing their own experiences of participation in a university Research Ethics Committee. Public contributors were therefore involved in study design, interpretation, and reporting.