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08 June 2026, by Jurgen Grotz

We need to get it right!

Our individual and organisational responsibilities in developing and supporting ethical Patient and Public Involvement and Engagement practice.

Summary

Universities and many others involve thousands of people as Patient and Public Involvement and Engagement (PPIE) contributors, to advise about the design and delivery of research projects. PPIE contributors are expected to receive remuneration for their time, but mostly they are not staff of the organisations involving them, and they are not research participants recruited as part of a study.

That means that they are not protected by employment law or by the strict rules protecting research participants. That is a problem because it leaves PPIE contributors at risk of harm, does not give them any professional protection of their knowledge and contribution, and means they can be included or excluded without transparency or a place to complain to.

Across the UK many organisations are working to address that problem. But they are currently not working together, and they do not even agree on the meaning of some of the words they use. They also do not agree on how to take this forward. This conversation is about getting everybody together to make a plan, to be clear what we are talking about, to come to a consensus about what might be best, to lead the way and to solve this problem.

It is important to us that we do as we say, even if that can make collaboration more difficult and progress slower. When coming together to resolve this we need to do our best to ensure that PPIE contributors are not just inclusively involved but also protected.

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Introduction

Policies and practices for Patient and Public Involvement and Engagement (PPIE) in shaping research in the interests of wider society, and not just of researchers and service commissioners, are increasingly required in health research, funding and publishing. Much diverse guidance on how to involve PPIE contributors already gives information about theory and practice.

Members of the network Shared Commitment to Public Involvement in health and social care research, a group of research funders, regulators, and Higher Education Institutions led by the NHS Health Research Authority actively promote the UK Standards for Public Involvement in Research, to ensure that all health and social care researchers, whatever their location or funding source, receive a consistent message about the importance of public involvement.

However, PPIE in the UK is currently undertaken without consistent formal requirements to consider ethical issues of protecting those involved. While there are many examples of good involvement practice and much work has already been undertaken to further improve this, involvement practice has been described by participants in a recent round of workshops, described below, as inconsistent, ranging from excellent to unthinking, from considerate and careful, to callous.

Despite broad acceptance as a public good, the participants in the workshops agreed that there is no robust commonly agreed conceptual or evidence-base on what ethical public involvement is, nor how it works best. They also concluded that the lack of consistent requirements to consider ethical principles puts PPIE contributors, those involving them and the wider public at risk of overlooking and failing to identify potential and actual harms. Despite some previous attempts (Pandya-Wood et al 2017; Grotz et al 2022 and Suri et al 2024) and ongoing initiatives in some institutions, there is currently no systematic UK wide effort to address this.

Discussion

Therefore, supported by members of the Shared Commitment to Public Involvement in health and social care research network, (see acknowledgements), on 18 March 2026, a group of twenty-five experts discussed ethical public involvement with me and Laura Watts, in two online roundtable discussions. Six PPIE contributors were joined by ten members of staff from eight universities, and seven others from research funders, regulators and policy makers, an author and a consultant. Most agreed to be listed below.

Before we got together, participants had an opportunity to comment on the description of the issue and how it might be discussed. We recognised that there are many dispersed efforts and examples of good practice, including existing pledges and frameworks, and everybody confirmed that there is a clear rationale for getting ethical public involvement right. However, we also concluded that many issues remain currently unresolved and that there is no consistent approach to addressing them. We found that ethical public involvement practice is inconsistent across the UK without a clear improvement pathway.

Together we then identified four key themes that should be addressed urgently and here are some of the observations. These comments are not exhaustive but offer examples within the key themes.

Protection from harm

·       Avoiding harm must be of prime importance and should include trauma informed approaches.

·       We do not systematically collect information across the UK of instances when involvement does not work well or is harmful.

Fairness and respect

·       Much research and involvement remains extractive, meaning communities, those involved and their knowledge are being ‘used’ without benefit to them.

·       Reciprocity and mutual benefit remain difficult to achieve, and respect for those involved and their knowledge is not foregrounded.

Inclusion and removal of barriers

·       Structures for involvement, such as payments, are often not fit for purpose and many barriers still exist in diverse contexts, from recognising cultural norms to making reasonable adjustments supporting access, including plain language.

·       Power imbalances, for example. between researchers, research funders, service users and communities lead to systemic exclusion.

Language, transparency and involvement skills

·       Terms appear ill defined and have different meanings in settings, such as ‘involvement,’ ‘engagement’ ‘participatory research,’ ‘research participant’ ‘expectations of reciprocity’ or ‘co-production practice.’

·       Many involved remain unfamiliar with existing guidance on good practice, meaning language is used superficially, and involvement practice is insufficiently informed.

Together we also considered what should and could be done.

We concluded that despite existing efforts, the evidence and research gap leading to inconsistent practice has remained, meaning PPIE contributors and others involved are not sufficiently protected from harm and remain excluded. However, the question of how to bring about the necessary changes and to improve practice is complex and people do not necessarily agree. Some fear that more formal arrangements could be counterproductive, create an ‘us’ and ‘them’ culture and could even ‘kill off public involvement’ altogether. They suggest self-regulation rather than mandatory requirements. But self-regulation alone has not brought about change, so key stakeholders are encouraged to invest in knowledge and co-ordination, organisations should adjust obstructive structures and individuals might need to update their skills and learning. We identified a number of pathways which we want to explore further:

·       Build on existing work and networks, including the UK Standards for Public Involvement, to form a strong cross sector coalition developing and supporting ethical public involvement.

·       Clarify language to ensure it is consistently used and that it does not mislead, confuse or obfuscate.

·       Collect and disseminate existing examples and knowledge, reviewing existing discussions and evidence in the UK, extending worldwide if feasible, with findings easily accessible and free, not just for researchers but also communities, policy and practice.

·       Collect and disseminate information about examples when involvement does not work, might be harmful and might not be ethically informed.

·       Critically review the use of AI in Patient and Public Involvement and Engagement.

·       Encourage key stakeholders like research funders and universities to strategically invest in such efforts.

·       Support individuals to continuously update their knowledge to inform practice. For this, there should be a shared, reliable and consistent source of information.

Limitations

Five of the twenty-five participants did not respond to our request for comments or did not wish to be identified in the blog, so we do not name them below, but we want to explicitly recognise here their important contributions to this discussion. Some participants also offered comments about the blog which could not be included easily, but we will seek to explore them in the upcoming discussions. They suggested the need for conversation about:

·       how we understand the word ‘harm’ in connection with public involvement and what we can draw from when discussing it,

·       how we recognise the complexities of identity for PPIE contributors, meaning that people who may identify as service users or whatever term is used, may overlap with researchers, and vice versa,

·       how we set standards to ensure that PPIE contributors come from appropriately diverse backgrounds or experiences,

·       why we need to discuss the emerging role of AI in public involvement.

·       why we should discuss and challenge careless rhetoric such as referring to people and communities as ‘hard to reach’ or ‘underserved.’

Conclusion

In our discussions we unanimously agreed that many issues relating to ethical public involvement remain unresolved and that together we have an obligation to address this. To address it, on balance. we suggested to go for self-regulation rather than for mandatory requirements for fear that more formal arrangements would be counterproductive and could stop involvement activities altogether rather than improving them. To encourage the necessary changes, however, key stakeholders will need to invest in knowledge and co-ordination, organisations need to adjust obstructive structures and practices, and individuals need to update their learning continuously to inform their practice.

The group organising the round table discussion in March 2026 will now collaborate to organise further round table discussions in July, to identify practical steps and recommendations to take developing and supporting ethical public involvement forward, so that we get it right, as we must.

Participants

References

Grotz, J., Ledgard, M., and Poland, F. (2020) Patient and public involvement in health and social care: An introduction to theory and practice, Imprint Springer Nature and Palgrave Macmillan.

Pandya-Wood R, Barron DS, Elliott J. (2017) A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards. Res Involv Engagem. 2017 Apr 4;3:6. doi: 10.1186/s40900-017-0058-y. PMID: 29062531; PMCID: PMC5611655.

Suri S, Harrison SL, Bevin-Nicholls A, Shenton F, Atkinson S, Earle J, Williams G, Lally J. (2024) Patient and public involvement and engagement: Do we need an 'ethical anchor'? Res Involv Engagem. 2024 Oct 31;10(1):113. doi: 10.1186/s40900-024-00624-9. PMID: 39482787; PMCID: PMC11526663.

Acknowledgement, disclaimer and copyright

My involvement and that of four PPIE contributors was supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridgeshire and Peterborough NHS Foundation Trust and by the Institute for Volunteering Research at the University of East Anglia. Two more PPIE contributors were supported by the NIHR School for Primary Care Research and Health Data Research UK. Peter Beresford, Sophie Duncan, Jim Elliott, Victoria Hamer, Halle Johnson, Barbara Molony-Oates, Mark Rasburn, Doreen Tembo, Laura Watts and Roger Wilson, generously helped to organise the round tables discussions, with their knowledge and through their networks.

The views expressed in this blog are those of the author and not necessarily those of the NIHR or the Department of Health and Social Care, or any of the organisations and individuals named in the blog.

This summary is written as a ‘Blog’ and will initially be published on the Website of the Institute for Volunteering Research. Dissemination in this way will ensure that it can be freely shared without cost to the reader. Participating organisations, and other interested bodies can post this blog on their websites, providing this is gratis to the reader and the blog is accurately reproduced. To protect this process, I add the following statement:

This work is subject to copyright, held exclusively by the author(s). The author(s) are safe to assume that the advice and information in this report are believed to be true and accurate at the date of completion. The author(s) do not give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. This publication may be reproduced free of charge for research, private study or for internal circulation within an organisation. This is subject to it being reproduced and referenced accurately and not being used in a misleading context.

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