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Abstract

It is deemed good practice to involve patients routinely in research but no study has investigated the practical benefits, particularly to successful recruitment. To identify whether patient involvement is associated with study success. All studies listed on the Mental Health Research Network (MHRN) portfolio database (n = 374) were interrogated using logistic regression, ANOVA and Pearson's correlation to identify associations with study characteristics, funding bodies and recruitment success. Patient involvement increased over time although in some areas of research it was limited. Some funders, especially the National Institute for Health Research (NIHR), had more associated patient involvement than others. Studies that involved patients to a greater extent were more likely to have achieved recruitment targets (χ(2) = 4.58, P<0.05), defined as reaching at least 90% of the target. This is the first time associations with study success have been identified for patient involvement. Researchers might now consider ways to involve patients more comprehensively as this is associated with study success. Further research is needed to explore this finding.

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Growing recognition of the importance of service user involvement in mental health service planning and evaluation

Graham Thornicroft, Michele Tansella (2005)

Service user involvement in the planning and provision of mental health services has been growing over the last two decades, especially in countries and areas where institutional service provision has been changed to a community-orientated model of care. However, the material involvement of service users in mental health research is still in its infancy. The aim of this paper is to attempt to place these developments in a conceptual context, to summarise the ethics-based and evidence-based reasons why it has to be considered as necessary, and to illustrate some of the emerging evidence which shows the advantages to be gained from it. In particular the results of recent studies are briefly reported, showing that outcomes data rated by service users in some cases are more important than those rated by staff. The reduction in patient-ratedunmet needsin the social domain was the strongest predictor of an increase in subjective quality of life. The importance of including service user preferences within the content of the research questions is exemplified by the results of a recent study that showed that joint crisis plans can significantly reduce the use of compulsory admission during crises and by a review that demonstrated that the use of an explicit service user perspective produced distinctive insights into the long-term effects of Electro-Convulsive Therapy (ECT).

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VOICE: Developing a new measure of service users’ perceptions of inpatient care, using a participatory methodology

Jo Evans, Diana Rose, Clare Flach … (2012)

Background Service users express dissatisfaction with inpatient care and their concerns revolve around staff interactions, involvement in treatment decisions, the availability of activities and safety. Traditionally, satisfaction with acute care has been assessed using measures designed by clinicians or academics. Aims To develop a patient-reported outcome measure of perceptions of acute care. An innovative participatory methodology was used to involve services users throughout the research process. Method A total of 397 participants were recruited for the study. Focus groups of service users were convened to discuss their experiences and views of acute care. Service user researchers constructed a measure from the qualitative data, which was validated by expert panels of service users and tested for its psychometric properties. Results Views on Inpatient Care (VOICE) is easy to understand and complete and therefore is suitable for use by service users while in hospital. The 19-item measure has good validity and internal and test–retest reliability. Service users who have been compulsorily admitted have significantly worse perceptions of the inpatient environment. Conclusions A participatory methodology has been used to generate a self-report questionnaire measuring service users’ perceptions of acute care. VOICE encompasses the issues that service users consider most important and has strong psychometric properties.