What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke

BACKGROUND: Health researchers are encouraged to involve service users as partners in their research. There is a need to increase the evidence base of involvement, including an accumulation of empirical accounts of involvement practices, demonstrating how involvement influences research and refinement of the concept itself. AIMS: To report the development of a pilot study by academic researchers and stroke service users belonging to a user research group to investigate costs of stroke to individuals and families; to reflect on what this example of user involvement achieved and implications for what involvement means. METHODS: We conducted a 2-year ethnographic study that included participant observation, formal and informal interviews with professionals and user group members and documentary analysis. Data were systematically recorded to permit description of processes and reflexive analysis. RESULTS AND CONCLUSIONS: We report on five stages of the research process from service user identification of a research question to interpretation of pilot study findings. Professional researchers led the research process and developed a novel method to involve stroke service users in the development of a questionnaire. Some academic colleagues questioned the value of the proposed investigation as it did not appear to conform to implicit criteria of quality research. We argue that the moral status that user involvement has acquired means that academics' concerns about quality did not prevent the pilot study from being conducted. We suggest that much of what was undertaken might be considered standard good practice in developing new research studies but also identify additional benefits of user involvement. Implications for conceptual development and evaluation are discussed.