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Abstract

Why don't health researchers report consumer involvement?

Background  The expected influence of patients and the public on the relevance and design of research has yet to be determined. Our aims were to investigate if researchers publishing in international general medical journals had actively involved consumers in their research and the extent to which authors perceived that they had done so.Methods  Two researchers independently identified the extent to which there was consumer involvement in the research process in 200 published papers, randomly selected from each of four international general medical journals. Corresponding authors of the published research papers were surveyed to establish the extent to which they perceived that they had involved consumers in their studies.Findings Consumer   involvement actually occurred in six of the 200 original articles according to our established definitions – two papers in each of the British Journal of General Practice and British Medical Journal and one each in The Lancet and New England Journal of Medicine. One hundred and thirty two (66%) corresponding authors replied,of whom 54 (41%) reported that they had involved consumers in their research. Three-quarters (39) of these thought that involving consumers had had benefits.Interpretation   A minority of researchers are aware of the potential benefits of involving consumers in health-related research. There is a mismatch between researchers’ perceptions that they are involving consumers, and an established definition of consumer involvement. This appears to be due to a mix of researchers’ lack of knowledge or skills and omission of details about consumer involvement in the published papers.


Author(s):

Ruth Chambers



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