Involving users in low back pain research

Objective To involve users in the design of a research project that aims at describing a 12‐month course of low back pain in an adult population sample (epidemiological strand), and to determine how patient and professional perceptions of low back pain and its treatment relate to the use of health‐care and to subsequent outcome (qualitative strand). Design Three focus groups were organized in the preparatory phase of the project with general practitioners, other health professionals and low back pain sufferers. Issues pertaining to the experience of living with, or treating low back pain were explored and users were asked to identify relevant research questions for consideration within the study. Findings The focus groups revealed tensions between involving users as co‐researchers for design issues and their role as sufferers and health professionals who want to share their narrative accounts of low back pain. The group discussions produced a wealth of material for analysis, but no explicitly stated research topics. Three key themes and the process of user involvement in the focus groups are discussed. Conclusions The focus group format could be restrictive in that it allows for detailed exchange between participants, but is insufficiently geared towards the production of a research agenda. We draw conclusions as to possible approaches for user involvement in health services research design.