User involvement in the development of a research bid: barriers, enablers and impacts1

OBJECTIVE: To involve users in the development of a research bid to examine parents' experiences of having a pre-term baby, and to examine the barriers, enablers and impacts of user involvement. DESIGN: A mainly collaborative approach to user involvement was adopted, although different types of involvement were evident at different stages of the project. Users' experiences and perspectives provided the focus for the regular meetings which underpinned the writing of the research bid. The researcher acted as a facilitator in the development of the bid, with input from users and the wider advisory group. MAIN OUTCOMES: User involvement had an important impact on the development of the research aims, methods and on ethical aspects. Through careful collaboration a research bid was produced which was rooted in users' experiences, whilst also addressing key research questions. Key enablers for involvement included good working relationships, funding for the lead researchers time. Barriers included lack of financial support for users, the time-consuming nature of involvement and the language of research. CONCLUSIONS: If user involvement remains an international policy imperative with little if any support at the vital stage of bid development, policy-makers, service user organizations, researchers, health service providers and commissioners will need to recognize the limited nature of involvement that may result and the impact this would have on the evidence base. Researchers will need to recognize the resource implications of involvement at this point, and user groups will need to decide whether to participate when there is the greatest chance of influencing research but little or no funding.