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

Bibliographic Data

ID19508307
AuthorsAndrea Hilton (0000-0001-7264-0857, Faculty of Health Sciences, School of Paramedical Peri‐Operative and Advanced Practice University of Hull Hull UK), Molly Megson (0000-0003-3291-5961, Academy of Primary Care, Hull York Medical School University of Hull Hull UK), Aidin Aryankhesal (0000-0002-6695-227X, Faculty of Medicine and Health Sciences, School of Health Sciences University of East Anglia Norwich UK), Jessica Blake (0000-0002-5756-3053, Faculty of Medicine and Health Sciences, School of Health Sciences University of East Anglia Norwich UK), George Rook (TIMES Research Exeter UK), Anne Irvine (TIMES Research Exeter UK), Jinpil Um (0000-0002-6314-0508, University of Exeter Medical School Exeter UK), Anne Killett (0000-0003-4080-8365, Faculty of Medicine and Health Sciences, School of Health Sciences University of East Anglia Norwich UK), Ian Maidment (0000-0003-4152-9704, Aston Pharmacy School, College of Health and Life Sciences Aston University Birmingham UK), Yoon Loke (Faculty of Medicine and Health Sciences, School of Health Sciences University of East Anglia Norwich UK), Jayden van Horik (University of Exeter Medical School Exeter UK), Chris Fox (0000-0001-9480-5704, University of Exeter Medical School Exeter UK), TIMES programme team
Year2024
Volume27
Issue2
Publication date2024-04-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.14012
LanguageEN
Citations received2
References cited1

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

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