Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Comment
  • Published:

Nothing about us, without us — establishing a patient and public involvement and engagement group

Nature Reviews Neurology volume 21, pages 123–124 (2025)Cite this article

Subjects

Implementation of patient and public involvement and engagement (PPIE) to enable patients and carers to feel included and equal to healthcare professionals is challenging to do well. Here, leaders of a PPIE group share their lived experience and highlight the importance of addressing the needs of all participants to enable true partnership.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on SpringerLink
  • Instant access to the full article PDF.

USD 39.95

Prices may be subject to local taxes which are calculated during checkout

Fig. 1: Lead personnel in patient and public involvement and engagement at the Policy Research Unit in Dementia and Neurodegeneration at Queen Mary University of London.

References

  1. Brett, J. et al. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient 7, 387–395 (2014).

    Article  PubMed  Google Scholar 

  2. Dobson, R. et al. Moving towards meaningful patient and public engagement. Nat. Rev. Neurol. https://doi.org/10.1038/s41582-025-01061-2 (2025).

    Article  PubMed  Google Scholar 

  3. Charlton, J. I. Nothing About Us Without Us: Disability Oppression and Empowerment 1st edn (Univ. California Press, 1998).

  4. National Institute for Health and Care Research. NIHR public involvement feedback survey 2020-2021: The results. NIHR https://www.nihr.ac.uk/nihr-public-involvement-feedback-survey-2020-2021-results (2022).

Download references

Acknowledgements

This research is funded through the NIHR Policy Research Unit in Dementia and Neurodegeneration, reference NIHR206110. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Author information

Authors and Affiliations

  1. NIHR Policy Research Unit in Dementia and Neurodegeneration – Queen Mary University of London, Wolfson Institute of Population Health, Queen Mary University of London, London, UK

    Rachel Horne, Rosemary Phillips & Mohammed A. Rauf

Authors
  1. Rachel Horne
    View author publications

    Search author on:PubMed Google Scholar

  2. Rosemary Phillips
    View author publications

    Search author on:PubMed Google Scholar

  3. Mohammed A. Rauf
    View author publications

    Search author on:PubMed Google Scholar

Corresponding author

Correspondence to Mohammed A. Rauf.

Ethics declarations

Competing interests

The authors declare no competing interests.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Horne, R., Phillips, R. & Rauf, M.A. Nothing about us, without us — establishing a patient and public involvement and engagement group. Nat Rev Neurol 21, 123–124 (2025). https://doi.org/10.1038/s41582-025-01063-0

Download citation

  • Published:

  • Version of record:

  • Issue date:

  • DOI: https://doi.org/10.1038/s41582-025-01063-0

This article is cited by

Search

Advanced search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing