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The value of involving patients and members of the public in applied health services research and evaluation: a qualitative study

Saini, P, Shaima, H, Esmaeil, K-M, Mark, G, Clarissa, G, Saiqa, A, Anna, P, Lesley, H, Jane, C, Jenny, I and Mark, G (2021) The value of involving patients and members of the public in applied health services research and evaluation: a qualitative study. Research Involvement and Engagement, 7. ISSN 2056-7529

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Abstract – scientific*
Background: Public and Patient Involvement, Engagement and Participation research encompasses working with patients/service users (people with a medical condition receiving health service treatment), public members, caregivers and communities (who use services or care for patients). The Partner Priority Programme (PPP) was developed by the National Health Service [NHS] and local authority partners to share information and experience on evaluating new services being offered to patients that were seeking to reduce health inequalities, improve people’s health and wellbeing and reduce emergency hospital admissions. This paper seeks to explore an approach developed for involving the public as equal partners within the evaluation and decision-making processes of health and social care services research. The aim of this study was to identify how public advisors were included, the impact of their involvement, and how change occurred within the organisations following their involvement.
Methods: A qualitative approach using focus group discussions was adopted to explore the experiences of two cohorts of participants involved in PPP project teams. Focus groups were held with public advisors(n=9), interns (n=9; staff or public who received a funded internship for a PPP project), NHS and local authority initiative leads (n=10), and academic facilitators (n=14). These were transcribed verbatim and analysed using a thematic approach.

Results: Thirty-two public advisors were recruited to support 25 PPP projects across the Collaboration for Leadership in Applied Health Research and Care North West Coast [CLAHRC NWC] partner organisations. Three inter-related themes were conceptualised: 1)“Where it all started - involving public advisors” identified the varying journeys to recruitment and experiences of becoming a public advisor; 2)“Steps toward active involvement and engagement” related to public advisors becoming core team members; and 3) “Collaborative working to enhance public and patient involvement” relayed how projects 4 identified the benefits of working jointly with the public advisors, particularly for those who had not experienced this style of working before.
Conclusions: The findings indicate that the PPP model is effective for embedding PPI within health services research, and recommends that PPI is integrated at the earliest opportunity within research projects and service evaluations through the use of support-led and facilitative programmes.
* We would like to dedicate this paper to Dr Ruth Young, who developed the PPP, something she was immensely proud of. Tragically she passed whilst we were writing this paper. Her contribution was outstanding and she will always be missed.

Item Type: Article
Subjects: B Philosophy. Psychology. Religion > BF Psychology
R Medicine > RA Public aspects of medicine
Divisions: Psychology (from Sep 2019)
Publisher: BioMed Central
Date Deposited: 24 May 2021 10:56
Last Modified: 18 Jan 2022 15:45
DOI or ID number: 10.1186/s40900-021-00289-8
URI: https://researchonline.ljmu.ac.uk/id/eprint/15051
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