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Background <p>The 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.</p> Methods <p>Our 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.</p> Results <p>Twenty-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.</p> Conclusions <p>The 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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年1月28日

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  • Emma Lidington,
  • Morgaine Stiles,
  • Jessica Maudsley,
  • Jennifer Ching,
  • Andy Deutsch,
  • Natasha Lipman,
  • Emily Williamson,
  • Georgiana Synesi,
  • Karen Poole,
  • Eleanor Knuckey,
  • Tahera Hussain,
  • Christina Derksen,
  • Hannah Drysdale,
  • Laura White,
  • Georgia Mannion-Krase,
  • Cherrelle Salmon,
  • Jane Rigney,
  • Beth Stuart,
  • Rebecca Lewis

摘要

Background

The 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.

Methods

Our 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.

Results

Twenty-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.

Conclusions

The 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.