From passive subjects to equal partners: qualitative review of user involvement in research

Abstract

Background: The Department of Health and UK funding bodies have suggested that clinical academics work closely with mental health service users in research projects. Although there are helpful guidelines on the issues that have to be dealt with, there have been few examples of how this partnership research might be undertaken.

Aims: To illustrate the challenges in joint research projects.

Method: We subjected the process of user involvement to ten questions which arose in the development of a joint research project. The answers are an amalgamation of the user and clinical researcher considerations and are affected by hindsight.

Results: The involvement of the user-researcher changed the focus of the study and its design and content. More attention was paid to the intervention itself and the way in which it was delivered. This process increased the amount of time taken to carry out and write up the project as well as incurring financial costs for user consultation payments and dissemination.

Conclusions: This experience has clarified the contribution that users can make, for example by raising new research questions, by ensuring interventions are kept 'user friendly', and the selection of outcome measures.