Evidence map›Paper›PMID 41606646›Full record

ArticleResearch involvement and engagement2026

Establishing a set of acceptable demographic questions for use in health research through public consultation.

Emma Lidington, Morgaine Stiles, Jessica Maudsley, Jennifer Ching, Andy Deutsch, Natasha Lipman, Emily Williamson, Georgiana Synesi, Karen Poole, Eleanor Knuckey and 9 more

Abstract read
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In one paragraph

Article in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Group Poetry and Quilt-Making -Creative Public Involvement Approaches to Contentious Concepts in Frailty Research.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  2. Article
  3. Article
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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

19 authors.

Emma LidingtonCRUK Cancer Prevention Trials Unit, Centre for Cancer Screening Prevention and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, London, UK. e.lidington@qmul.ac.uk.
Morgaine StilesClinical Trials and Statistics Unit at the Institute of Cancer Research, London, UK.
Jessica MaudsleyClinical Trials and Statistics Unit at the Institute of Cancer Research, London, UK.
Jennifer ChingCRUK Cancer Prevention Trials Unit, Centre for Cancer Screening Prevention and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Andy DeutschIndependent Patient Representative, London, United Kingdom.
Natasha LipmanIndependent Patient Representative, London, United Kingdom.
Emily WilliamsonClinical Trials and Statistics Unit at the Institute of Cancer Research, London, UK.
Georgiana SynesiClinical Trials and Statistics Unit at the Institute of Cancer Research, London, UK.
Karen PooleClinical Trials and Statistics Unit at the Institute of Cancer Research, London, UK.
Eleanor KnuckeyCRUK Cancer Prevention Trials Unit, Centre for Cancer Screening Prevention and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Tahera HussainCentre for Evaluation and Methods, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Christina DerksenCentre for Cancer Screening Prevention and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Hannah DrysdaleCRUK Cancer Prevention Trials Unit, Centre for Cancer Screening Prevention and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Laura WhiteCentre for Evaluation and Methods, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Georgia Mannion-KraseBarts Cardiovascular Clinical Trials Unit (CVCTU), William Harvey Research Institute, Centre for Cardiovascular Medicine and Devices, Queen Mary University of London, London, UK.
Cherrelle SalmonCentre for Evaluation and Methods, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Jane RigneyCRUK Cancer Prevention Trials Unit, Centre for Cancer Screening Prevention and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Beth StuartCentre for Evaluation and Methods, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Rebecca LewisClinical Trials and Statistics Unit at the Institute of Cancer Research, London, UK. Rebecca.Lewis@icr.ac.uk.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe importance of inclusivity in health care and health research is increasingly recognised in the UK. However, there are currently no UK standards for collecting self-reported demographic data from research participants. To address this gap, we undertook a public involvement activity. We worked with patient and public involvement partners and members of the public to establish an acceptable set of demographic questions for adult participants, taken from national survey questions to ensure comparable data.

methodsOur project team, which included two patient and public involvement partners, selected demographic questions that covered characteristics protected by the UKs Equality Act 2010 or groups identified as potentially underserved in research. These questions covered health, disability, and unpaid care; education and employment; sexual orientation and gender identity; and ethnicity, language, and religion. We conducted four discussion groups to review the proposed questions with diverse members of the public. We explored their views on questions, the explanatory text for the purpose of data collection, data storage (i.e. pseudonymised or anonymous), the length of the question set and any missing topics.

resultsTwenty-nine public contributors took part. Of these, at least ten were from a minority ethnic background and eleven had one or more disabilities or long-term health conditions. Five contributors were people of faith, three were members of the LGBTQIA+ community, and seven had experience of providing unpaid care. Of the 18 questions, three were removed and ten were modified. This resulted in a revised question set of 15 items.

conclusionsThe implementation of this question set will help to standardise data collection across studies, increasing comparability and researchers' ability to evaluate inclusivity. The demographic question set is now available to non-commercial researchers across the UK as part of a pilot study to evaluate and improve its utility and performance.

Indexed as

DemographicsDiversityInclusivityPatient and public involvementPublic consultationTrial participation

Identifiers

PMID41606646
PMCPMC12924441

What OpenQuestion holds

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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.