Abstract: Four RCTs (n = 607) of user-held records versus treatment as usual met the inclusion criteria. When the effect of user-held records on psychiatric hospital admissions was compared with treatment as usual in four studies, the pooled treatment effect showed no significant impact of the intervention and was of very low magnitude (n = 597, 4 RCTs, RR 0.99 CI 0.71 to 1.38, moderate quality evidence). Similarly, there was no significant effect of the intervention in three studies which investigated compulsory psychiatric hospital admissions (n = 507, 4 RCTs, RR 0.64 CI 0.37 to 1.10, moderate quality evidence). Other outcomes including satisfaction and mental state were investigated but pooled estimates were not obtainable due to skewed or poorly reported data, or only being investigated by one study. Two outcomes (violence and death) were not investigated by the included studies. Two important randomised studies are ongoing. The evidence gap remains regarding user-held, personalised, accessible clinical information for people with psychotic illnesses for many of the outcomes of interest. However, based on moderate quality evidence, this review suggests that there is no effect of the intervention on hospital or outpatient appointment use for individuals with psychotic disorders. The number of studies is low, however, and further evidence is required to ascertain whether these results are mediated by the type of intervention, such as involvement of a clinical team or the type of information included.

Plain-language summary: Based on a search in 2011, this review includes four trials with a total of 607 people and evaluates the effects of user-held information for people with severe mental illness. In the main, the number of relevant studies is low, with poor reporting of some outcomes. Based on moderate quality evidence, the review found that user-held information did not decrease hospital admissions, and did not decrease compulsory admissions or encourage people with severe mental illness to attend appointments (when compared to treatment as usual). Other important outcomes, such as satisfaction with care, costs and effect on mental health, were not available due to the limited quality of the four studies. There is therefore a gap in knowledge and evidence regarding user-held information for people with severe mental health problems. Further evidence is also required on the different types of user-held information (for example, if it involves the mental health team and what type of information is included in the record). Large-scale, well-conducted and well-reported studies are required to assess the effects of user-held information for people with mental illness. Two important randomised studies are currently taking place. For the present, despite a gap in evidence, user-held information is low cost and acceptable to patients, so its use is likely to grow. However, it cannot be assumed that user-held information is of benefit to people and is cost-effective without further large-scale, well-conducted and well-reported trials. This plain language summary has been written by a consumer, Benjamin Gray: Rethink Mental Illness. E-mail: [email protected]