Tools
Tools
Hilton, Andrea, Megson, Molly, Aryankhesal, Aidin 
ORCID: https://orcid.org/0000-0002-6695-227X, Blake, Jessica, Rook, George, Irvine, Anne, Um, Jinpil, Killett, Anne ORCID: https://orcid.org/0000-0003-4080-8365, Maidment, Ian, Loke, Yoon, van Horik, Jayden and Fox, Chris
and
TIMES programme team
(2024)
What really is nontokenistic fully inclusive patient and public involvement/engagement in research?
Health Expectations, 27 (2).
ISSN 1369-6513
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.
| Item Type: | Article |
|---|---|
| Additional Information: | Funding Information: The authors would like to thank Rachael Litherland (Innovations in Dementia); Ruth Eley (together in dementia everyday); Di Burbidge (Liverpool Chinese Wellbeing) and all the members of the LEAFs groups who have critically reviewed this editorial. They are grateful for the support of NIHR ARC (East of England) and the UKCRC-registered Exeter CTU's involvement in collaborating on the TIMES Programme, and for the involvement of TIMES Programme Manager Dr Jayden van Horik and Research Fellow Dr Jinpil Um, in centrally managing the trial elements, including PPI engagement. 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. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Funding Information: The authors would like to thank Rachael Litherland (Innovations in Dementia); Ruth Eley (together in dementia everyday); Di Burbidge (Liverpool Chinese Wellbeing) and all the members of the LEAFs groups who have critically reviewed this editorial. They are grateful for the support of NIHR ARC (East of England) and the UKCRC‐registered Exeter CTU's involvement in collaborating on the TIMES Programme, and for the involvement of TIMES Programme Manager Dr Jayden van Horik and Research Fellow Dr Jinpil Um, in centrally managing the trial elements, including PPI engagement. 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. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Publisher Copyright: © 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd. |
| Uncontrolled Keywords: | epistemic justice,inclusivity,patient and public involvement and engagement,public health, environmental and occupational health,sdg 3 - good health and well-being ,/dk/atira/pure/subjectarea/asjc/2700/2739 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences Faculty of Medicine and Health Sciences > Norwich Medical School |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Science > Research Groups > Norwich Epidemiology Centre Faculty of Medicine and Health Sciences > Research Groups > Norwich Epidemiology Centre Faculty of Medicine and Health Sciences > Research Groups > Health Services and Primary Care Faculty of Medicine and Health Sciences > Research Centres > Population Health |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 16 Apr 2024 12:30 |
| Last Modified: | 21 Apr 2024 23:54 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/94914 |
| DOI: | 10.1111/hex.14012 |
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