Abstract
BackgroundPublic 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.MethodWe 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 co-production.ResultsSixteen 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.ConclusionWe supported patients and carers to co-produce the SUCCESS model of involvement in research. The model’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.
Highlights
Public and patient involvement is a routine element of health services research methods to produce better designed and reported studies
Meaningful public involvement in research is best achieved by collaboration, where research is co-produced by public and patient members working within research teams, or by service user-led approaches [1, 16, 17]
Respiratory and heart conditions, diabetes and epilepsy, five of the six most common chronic conditions experienced in Wales
Summary
Public and patient involvement is a routine element of health services research methods to produce better designed and reported studies. 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. There is evidence that research methods planned and implemented in partnership with patients and public members produce better designed and reported studies [5, 6]. Evans et al BMC Medical Research Methodology (2019) 19:34 questions which are defined and how they are studied by research teams [5, 18, 19] This fits the definition of active involvement, as research carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them [1]
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