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A co-produced method to involve service users in research: the SUCCESS model / Bridie Angela Evans; Alison Porter; Helen Snooks; Vanessa Burholt

BMC Medical Research Methodology, Volume: 19, Issue: 1

Swansea University Author: Burholt, Vanessa

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Abstract

Background: Public and patient involvement is a routine element of health services research methods to produce better designed and reported studies. Although co-production is recommended when involving people in research, methods for involving people are usually designed and managed by researchers a...

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Published in: BMC Medical Research Methodology
ISSN: 1471-2288
Published: 2019
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa49007
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Abstract: Background: Public and patient involvement is a routine element of health services research methods to produce better designed and reported studies. Although co-production is recommended when involving people in research, methods for involving people are usually designed and managed by researchers and there is little evidence about methods to co-produce models for effective public and patient involvement. We report the method used by a group of patient and carer service users to develop and implement a model for involving public members in research. Method: We recruited people with experience of chronic conditions, as patients and carers, and supported them to develop and implement the involvement model. We collected written records to describe the processes of coproduction. Results: Sixteen service users were involved through a series of workshop, meeting and email discussions. They specified principles and operating characteristics of the model which concerned an inclusive culture, adequate resources, accessibility, good communication and clarity of purpose and roles. Components of the model included an on-line Panel of members (n = 20), Steering Group meetings, representation and communication system, facilitator, supportive research environment and access to research activities. Over 8 years, members were active in 218 research activities and held 22 Steering Group meetings. The model was named SUCCESS standing for Service Users with Chronic Conditions Encouraging Sensible Solutions. Conclusion: We supported patients and carers to co-produce the SUCCESS model of involvement in research. Themodel’s components, addressing their needs and priorities, led to sustained involvement in research over 8 years. Further work is needed to apply the model in different settings and assess impact of this method of involving people in research.
Keywords: PPI, Patient and public involvement, Co-production
College: College of Human and Health Sciences
Issue: 1