Abstract
BACKGROUND: Public resources to answer pertinent research questions about the impact of illness and treatment on people with mental health problems are limited. To target funds effectively and efficiently and maximize the health benefits to populations, prioritizing research areas is needed. Research agendas are generally driven by researcher and funder priorities, however, there is growing recognition of the need to include user-defined research priorities to make research more relevant, needs-based and efficient. OBJECTIVE: To gain consensus on top priorities for research into early intervention in psychosis through a robust, democratic process for prioritization enlisting the views of key stakeholders including users, carers and healthcare professionals. We also sought to determine which user-prioritized questions were supported by scientific evidence. DESIGN AND METHODS: We used a modified nominal group technique to gain consensus on unanswered questions that were obtained by survey and ranked at successive stages by a steering group comprising users, carer representatives and clinicians from relevant disciplines and stakeholder bodies. We checked each question posed in the survey was unanswered in research by reviewing evidence in five databases (Medline, Cinahl, PsychInfo, EMBASE and Cochrane Database). RESULTS: Two hundred and eighty-three questions were submitted by 207 people. After checking for relevance, reframing and examining for duplicates, 258 questions remained. We gained consensus on 10 priority questions; these largely represented themes around access and engagement, information needs before and after treatment acceptance, and the influence of service-user (SU) priorities and beliefs on treatment choices and effectiveness. A recovery SUtheme identified specific self-management questions and more globally, a need to fully identify factors that impact recovery. DISCUSSION AND CONCLUSIONS: Published research findings indicated that the priorities of service users, carers and healthcare professionals were aligned with researchers' and funders' priorities in some areas and misaligned in others providing vital opportunities to develop research agendas that more closely reflect users' needs. PATIENT AND PUBLIC CONTRIBUTION: Initial results were presented at stakeholder workshops which included service-users, carers, health professionals and researchers during a consensus workshop to prioritize research questions and allow the opportunity for feedback. Patient and public representatives formed part of the steering group and were consulted regularly during the research process.