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

Abstract

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.

Publication DOI: https://doi.org/10.1111/hex.14012
Divisions: College of Health & Life Sciences > Aston Pharmacy School
College of Health & Life Sciences
Funding Information: This study is funded by the National Institute for Health and Care Research (NIHR) under its Programme Grants for Applied Research (PGfAR), Grant Reference Number NIHR202345.
Additional Information: 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.
Uncontrolled Keywords: epistemic justice,inclusivity,patient and public involvement and engagement,Public Health, Environmental and Occupational Health
Publication ISSN: 1369-7625
Data Access Statement: Data are available from the corresponding author upon reasonable request.
Last Modified: 27 May 2024 07:42
Date Deposited: 27 Mar 2024 12:06
Full Text Link:
Related URLs: https://onlinel ... .1111/hex.14012 (Publisher URL)
http://www.scop ... tnerID=8YFLogxK (Scopus URL)
PURE Output Type: Editorial
Published Date: 2024-04
Published Online Date: 2024-03-15
Accepted Date: 2024-02-23
Authors: Hilton, Andrea
Megson, Molly
Aryankhesal, Aidin
Blake, Jessica
Rook, George
Irvine, Anne
Um, Jinpil
Killett, Anne
Maidment, Ian (ORCID Profile 0000-0003-4152-9704)
Loke, Yoon
van Horik, Jayden
Fox, Chris

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