What really is nontokenistic fully inclusive patient and public involvement/engagement in research?

Andrea Hilton, Molly Megson, Aidin Aryankhesal, Jessica Blake, George Rook, Anne Irvine, Jinpil Um, Anne Killett, Ian Maidment, Yoon Loke, Jayden van Horik, Chris Fox

Research output: Contribution to journalEditorialpeer-review


Patient and public involvement and engagement (PPIE) is critically important in healthcare research. A useful starting point for researchers to understand the scope of PPIE is to review the definition from the National Institute for Health and Care Research (NIHR) as, 'research being carried out "with" or "by" members of the public rather than "to", "about" or "for" them'. PPIE does not refer to participation in research, but to actively shaping its direction. The 'Effectiveness of a decision support tool to optimise community-based tailored management of sleep for people living with dementia or mild cognitive impairment (TIMES)' study is funded through the NIHR programme grant for applied research. TIMES has thoroughly embraced PPIE by ensuring the person's voice is heard, understood, and valued. This editorial showcases how the TIMES project maximised inclusivity, and we share our experiences and top tips for other researchers. We base our reflections on the six key UK standards for public involvement; Inclusive Opportunities, Working Together, Support and Learning, Communications, Impact and Governance. We present our work, which had been co-led by our PPIE leads, academics and partners including, together in dementia everyday, Innovations in Dementia, The UK Network of Dementia Voices (Dementia Engagement & Empowerment Project) and Liverpool Chinese Wellbeing. We have a Lived Experience Advisory Forum on Sleep, which includes people with dementia, family carers, representatives of the South Asian Community and the Chinese community.

Original languageEnglish
Article numbere14012
Number of pages5
JournalHealth Expectations
Issue number2
Early online date15 Mar 2024
Publication statusPublished - Apr 2024

Bibliographical note

Copyright © 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Data Access Statement

Data are available from the corresponding author upon reasonable request.


  • epistemic justice
  • inclusivity
  • patient and public involvement and engagement


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