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As service user involvement in health and social care research has become more firmly embedded in health policies, both in the UK and internationally, there is increasing interest in evaluating its potential benefits and outcomes. Impact studies have highlighted a range of different types of service user involvement, using diverse research methods, within various research topics and involving different stakeholders. Potential benefits to research, researchers and the service users actively involved in research have been identified, along with the possibility of some negative consequences. Many impact studies have been criticized for being based on informal retrospective accounts of researchers and service users working together. Few have been underpinned by conceptual models, and there is a paucity of detailed accounts of the process of involvement that would enable replication. This paper reports an account of a prospective, qualitative exploration of service user involvement within a study, where the aims of the evaluation were agreed beforehand. Reflective discussions about the process and progress of service user involvement at different stages of the study were recorded, transcribed and analysed. The qualitative analysis identified perceived benefits to research, researchers and service user researchers that endorsed previous findings. The analysis also highlighted subjective and interpersonal aspects of service user involvement that have seldom been reported. This evaluation demonstrates the benefits of allowing time for structured reflection and adds to the understanding of the process and meaning of service user involvement in research.

Background Involving mental health service users in planning and reviewing their care can help personalised care focused on recovery, with the aim of developing goals specific to the individual and designed to maximise achievements and social integration. We aimed to ascertain the views of service users, carers and staff in acute inpatient wards on factors that facilitated or acted as barriers to collaborative, recovery-focused care. Methods A cross-national comparative mixed-methods study involving 19 mental health wards in six service provider sites in England and Wales. This included a survey using established standardised measures of service users ( n = 301) and staff ( n = 290) and embedded case studies involving interviews with staff, service users and carers ( n = 76). Quantitative and qualitative data were analysed within and across sites using descriptive and inferential statistics, and framework method. Results For service users, when recovery-oriented focus was high, the quality of care was rated highly, as was the quality of therapeutic relationships. For staff, there was a moderate correlation between recovery orientation and quality of therapeutic relationships, with considerable variability. Staff members rated the quality of therapeutic relationships higher than service users did. Staff accounts of routine collaboration contrasted with a more mixed picture in service user accounts. Definitions and understandings of recovery varied, as did views of hospital care in promoting recovery. Managing risk was a central issue for staff, and service users were aware of measures taken to keep them safe, although their involvement in discussions was less apparent. Conclusions There is positive practice within acute inpatient wards, with evidence of commitment to safe, respectful, compassionate care. Recovery ideas were evident but there remained ambivalence on their relevance to inpatient care. Service users were aware of efforts taken to keep them safe, but despite measures described by staff, they did not feel routinely involved in care planning or risk management decisions. Research on increasing therapeutic contact time, shared decision making in risk assessment and using recovery focused tools could further promote personalised and recovery-focused care planning. This paper arises from a larger study published by National Institute for Health Research (Simpson A, et al, Health Serv Deliv Res 5(26), 2017). Electronic supplementary material The online version of this article (10.1186/s12888-019-2094-7) contains supplementary material, which is available to authorized users.

Evidence-based medicine (EBM) and clinical governance play a central role in raising the quality of medical care. People want clinical decisions to be based on the best evidence and EBM places scientific knowledge in the service of clinical decision-making. Yet a quite different agenda is engaging patients as partners in health research, to make the medical profession more accountable. Here, we examine the epistemological basis of EBM, and the ethical concerns raised by this. In particular, we examine the value of user-led research in psychiatry in improving the concept of ‘evidence’ in evidence-based psychiatry.