Evidence map›Paper›PMID 38822417›Full record

ArticleResearch involvement and engagement2024

Public involvement and engagement in scientific research and higher education: the only way is ethics?

Claire Nollett, Matthias Eberl, Jim Fitzgibbon, Natalie Joseph-Williams, Sarah Hatch

Abstract readLetter
In one paragraph

Article in Research involvement and engagement, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers.

0numbers the graph read from it
0cells of the map it votes in
26citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

26 citing papers in PubMed.

  1. Review
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  7. No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement.Health expectations : an international journal of public participation in health care and health policy · 2026
    Review
  8. Article
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  16. Listening to Women's Voices: A Patient and Public Involvement Exercise Exploring Vulval Reconstructive Surgery for UK Women With Female Genital Mutilation (FGM).Health expectations : an international journal of public participation in health care and health policy · 2025
    Article
  17. Review
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Claire NollettCentre for Trials Research, Cardiff University, 7th Floor, Neuadd Meirionnydd, Heath Park Campus, Cardiff, UK. nollettcl@cardiff.ac.uk.
Matthias EberlDivision of Infection and Immunity, School of Medicine, Cardiff University, Cardiff, UK.
Jim FitzgibbonSchool of Medicine, Lead Public Contributor, Cardiff University, Cardiff, UK.
Natalie Joseph-WilliamsDivision of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK.
Sarah HatchPublic Involvement and Engagement Team, School of Medicine, Cardiff University, Cardiff, UK. hatchs@cardiff.ac.uk.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundInvolving and engaging the public in scientific research and higher education is slowly becoming the norm for academic institutions in the United Kingdom and elsewhere. Driven by a wide range of stakeholders including regulators, funders, research policymakers and charities public involvement and public engagement are increasingly seen as essential in delivering open and transparent activity that is relevant and positively impacts on our society. It is obvious that any activities involving and engaging members of the public should be conducted safely and ethically. However, it is not clear whether conducting activities ethically means they require ethical approval from a research ethics committee. MAIN BODY: Although there is some guidance available from government organisations (e.g. the UK Health Research Authority) to suggest ethical approval is not required for such activities, requests from funders and publishers to have ethical approval in place is commonplace in the authors' experience. We explore this using case studies from our own institution.

conclusionWe conclude that any public-facing activity with the purpose to systemically investigate knowledge, attitudes and experiences of members of the public as research and as human participants requires prior approval from an ethics committee. In contrast, engaging and involving members of the public and drawing on lived experience to inform aspects of research and teaching does not. However, lack of clarity around this distinction often results in the academic community seeking ethical approval 'just in case', leading to wasted time and resources and erecting unnecessary barriers for public involvement and public engagement. Instead, ethical issues and risks should be appropriately considered and mitigated by the relevant staff within their professional roles, be it academic or a professional service. Often this can involve following published guidelines and conducting an activity risk assessment, or similar. Moving forward, it is critical that academic funders and publishers acknowledge the distinction and agree on an accepted approach to avoid further exacerbating the problem.

Indexed as

Ethical approvalEthicsPPIPublic engagementPublic involvementResearch ethics committee

Identifiers

PMID38822417
PMCPMC11140937

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.