User-held information is where the ill person holds personal information about their care. Such records are becoming the norm in many settings and are becoming more popular with patients. This is especially the case where the person concerned is not in hospital and receives care from more than one professional. Providing people with information about their care is thought to increase their feelings of involvement in their treatment and aims to increase people’s satisfaction and participation with services, ensure early treatment and prevent hospital admission.
The value of user-held personal information for those with severe mental illnesses is not known however and research evaluating the effectiveness is rare. Some research suggests that while many people decline the offer of a user-held record, the majority of those who carry their records report this to be useful.
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: ben.gray@rethink.org
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.
It is important to seek cost-effective methods of improving the care and outcome of those with serious mental illnesses. User-held records, where the person with the illness holds all or some personal information relating to the course and care of their illness, are now the norm in some clinical settings. Their value for those with severe mental illnesses is unknown.
To evaluate the effects of personalised, accessible, user-held clinical information for people with a severe mental illness (defined as psychotic illnesses).
We updated previous searches by searching the Cochrane Schizophrenia Group Trials Register in August 2011. This register is compiled by systematic searches of major databases, and handsearches of journals and conference proceedings.
We included all relevant randomised controlled trials (RCTs) that:
i. have recruited adult participants with a diagnosis of a severe mental illness (specifically psychotic illnesses and severe mood disorders such as bipolar and depression with psychotic features); and
ii. compared any personalised and accessible clinical information held by the user beyond standard care to standard information routinely held such as appointment cards and generic information on diagnosis, treatment or services available.
Study selection and data extraction were undertaken independently by two authors and confirmed and checked by a third. We contacted authors of trials for additional and missing data. Where possible, we calculated risk ratios (RR) and 95% confidence intervals (CI). We used a random-effects model. We assessed risk of bias for included studies and created a 'Summary of findings' table using GRADE.
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.