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

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

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, Impactand Governance. We present our work, which had been co-led by our PPIEleads, academicsand partners including, together in dementia everyday, Innovations in Dementia, The UK Network of Dementia Voices (DementiaEngagement & 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.

Citation

Hilton, A., Megson, M., Aryankhesal, A., Blake, J., Rook, G., Irvine, A., Um, J., Killett, A., Maidment, I., Loke, Y., van Horik, J., Fox, C., & TIMES programme team. (2024). What really is nontokenistic fully inclusive patient and public involvement/engagement in research?. Health Expectations, 27(2), Article e14012. https://doi.org/10.1111/hex.14012

• Journal Article Type: Editorial
• Acceptance Date: Feb 23, 2024
• Online Publication Date: Mar 15, 2024
• Publication Date: Apr 1, 2024
• Deposit Date: Mar 21, 2024
• Publicly Available Date: Mar 25, 2024
• Journal: Health Expectations
• Print ISSN: 1369-6513
• Electronic ISSN: 1369-7625
• Publisher: Wiley
• Peer Reviewed: Not Peer Reviewed
• Volume: 27
• Issue: 2
• Article Number: e14012
• DOI: https://doi.org/10.1111/hex.14012
• Keywords: Epistemic justice; Inclusivity; Patient and public involvement and engagement
• Public URL: https://hull-repository.worktribe.com/output/4609633