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Planning and enabling meaningful patient and public involvement in dementia research

Burton, A; Ogden, M; Cooper, C; (2019) Planning and enabling meaningful patient and public involvement in dementia research. Current Opinion in Psychiatry , 32 (6) pp. 557-562. 10.1097/YCO.0000000000000548. Green open access

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Abstract

PURPOSE OF REVIEW: To summarize the latest evidence on patient and public involvement (PPI) in dementia research. To identify methodologies used to deliver and evaluate co-production, potential barriers to involvement, and effective strategies to enable meaningful involvement of PPI representatives in dementia research. RECENT FINDINGS: PPI expertise in dementia research has been utilized to increase the acceptability of new interventions to end users and to interpret research findings from a PPI perspective. Practical adaptations to materials and meetings, and building relationships and trust were important facilitators for engagement. PPI has included caregivers, people living with dementia or both, with few studies involving the public or professionals. Engaging people living with dementia and hard-to-reach groups in PPI is challenging, with most current PPI representatives recruited from dementia organisations. Few studies have assessed the impact of PPI on study outcomes. SUMMARY: In this relatively new field, methods that allow meaningful engagement are being iteratively developed. Greater community and patient engagement will be a prerequisite for increasing diversity of PPI, to ensure voices of a broader range of stakeholders are heard. Documenting and publicizing the impact of this work and engaging existing PPI representatives to support PPI recruitment could help with this.

Type: Article
Title: Planning and enabling meaningful patient and public involvement in dementia research
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1097/YCO.0000000000000548
Publisher version: https://doi.org/10.1097/YCO.0000000000000548
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: co-production, dementia, patient, public involvement
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Behavioural Science and Health
URI: https://discovery.ucl.ac.uk/id/eprint/10079058
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