Consumer involvement in health research: a UK scoping and survey

• DOI: 10.1111/ijcs.12072
• Publication Date: 2014-01-09T06:30:52Z
• Authors: Elspeth Mathie; Patricia Wilson; Fiona Poland; Elaine McNeilly; Amanda Howe; Sophie Staniszewska; Marion Cowe; Diane Munday; Claire Goodman
• Keywords: Public Involvement; Empirical Research

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