Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact |
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| Authors: | Sophie Staniszewska Ade Adebajo Rosemary Barber Peter Beresford Louca‐Mai Brady Jo Brett Jim Elliott David Evans Kirstie L. Haywood David Jones Carole Mockford Mary Nettle Diana Rose Tracey Williamson |
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| Affiliation: | 1. School of Health and Social Studies, RCN Research Institute, University of Warwick, Coventry, UK;2. Academic Rheumatology Group, University of Sheffield, Sheffield, UK;3. School of Health and Related Studies, University of Sheffield, Sheffield, UK;4. Centre for Citizen Participation, Brunel University and Chair of Shaping Our Lives, The National Service User and Disabled People's Network, Brunel University, Uxbridge, UK;5. Independent Researcher, London UK, formerly NCB Research Centre, National Children's Bureau, London, UK;6. School of Health and Social Studies, Royal College of Nursing Research Institute, University of Warwick, Coventry, Warwickshire, UK;7. Research Management Consultant, Drakesyard Consultancy Limited, Cambridge, UK;8. Department of Health and Applied Social Sciences, Faculty of Health and Life Sciences, University of the West of England, Bristol, UK;9. Diabetes UK, London, UK;10. Self Employed Mental Health User Consultant, Worcester, UK;11. Service User Research Enterprise (SURE), PO34, The Dand Goldberg Centre, Institute of Psychiatry, King's College London, UK;12. Centre for Innovation and Evaluation, Centre for Nursing & Midwifery Research, University of Salford, Salford, UK |
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| Abstract: | While patient and public involvement (PPI) in health and social care research has progressed successfully in the last decade, a range of difficulties with the evidence base exist, including poor understanding of the concept of impact, limited theorization and an absence of quantitative impact measurement. In this paper, we argue that a paradigm change towards robust measurement of the impact of involvement in research is needed to complement qualitative explorations. We argue that service users should be collaboratively involved in the conceptualization, theorization and development of instruments to measure PPI impact. We consider the key advantages measurement would bring in strengthening the PPI evidence base through a greater understanding of what works, for whom, in what circumstances and why. |
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| Keywords: | Patient and public involvement measurement impact evidence base health and social care research |
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