Consumer involvement in health research:A UK scoping and survey

Mathie, Elspeth, Wilson, Patricia, Poland, Fiona ORCID:, McNeilly, Elaine, Howe, Amanda, Staniszewska, Sophie, Cowe, Marion, Munday, Diane and Goodman, Claire (2014) Consumer involvement in health research:A UK scoping and survey. International Journal of Consumer Studies, 38 (1). pp. 35-44. ISSN 1470-6423

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Consumer involvement or patient and public involvement (PPI) in health research is a UK policy imperative and a prerequisite for many funders. PPI in research is defined as research carried out with or being carried out by the public (or service users), rather than research on patients and public as subjects or participants. Despite the clear policy driver, there is relatively little empirical evidence on the extent, processes and impact of user involvement in research. This paper aims to add to the international evidence base on PPI in research by providing a key overview of current trends and impacts. In order to understand the current extent and variation of PPI in research, a scoping exercise and survey were carried out on selected UK studies. Six research topic areas (cystic fibrosis, diabetes, arthritis, dementia, intellectual and developmental disabilities, and public health) were selected to ensure a range of designs, study populations and histories of PPI in research. A total of 838 studies (non-commercial studies and not older than 2 years) were contacted. The response rate for the scoping was 38% and the survey 28%. In the scoping, 51% of studies had some evidence of PPI and in the survey 79%. The most common PPI activity was steering committee membership and reviewing patient information leaflets. There appeared to be some blurred roles with patients participating as research subjects as well as carrying out patient involvement roles. A major finding was the limited amount of available information about PPI in publicly accessible research documents. We suggest that the invisibility of this type of involvement and the lack of routinely collected information about PPI results in a lack of shared understanding of what optimal PPI in a study should look like, with important implications for practice. Furthermore, without a framework to review PPI it is difficult to know if different approaches to PPI have a different impact on key outcomes of the research.

Item Type: Article
Uncontrolled Keywords: user,patient and public involvement,health research,consumer involvement,research policy,sdg 3 - good health and well-being ,/dk/atira/pure/sustainabledevelopmentgoals/good_health_and_well_being
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
Faculty of Medicine and Health Sciences > Norwich Medical School
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Faculty of Medicine and Health Sciences > Research Groups > Health Services and Primary Care
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Depositing User: Pure Connector
Date Deposited: 23 Mar 2015 14:12
Last Modified: 21 Oct 2022 00:44
DOI: 10.1111/ijcs.12072

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