‘But don’t they get lost?’ This is usually the first comment made when the authors mention the use of patient-held records (PHRs) to colleagues. Nevertheless, PHRs have been used in mental health care as well as several other settings, including services for diabetes, cancer, maternity and child health. In some of these services, including mental health, PHRs have been an addition to clinician held standard notes, whereas in others the patient holds the only record for their care. The main purposes of introducing PHRs have been to empower patients with a sense of ownership of their care and to improve communication, between both patients and clinicians, as well as between different clinicians involved in that person’s care (Laugharne & Stafford, 1996).
An earlier review of literature on PHRs in mental health suggested that they are received positively by patients who use them, but few studies had evaluated their benefits (Laugharne & Stafford, 1996). Since then a Cochrane systematic review (Henderson & Laugharne, 1999) and two randomised controlled trials (Warner et al, 2000; Lester et al, 2003) have been published and other trials of these records have evaluated their use in cancer care (Drury et al, 2000; Williams et al, 2001; Cornbleet et al, 2002; Lecouturier et al, 2002).
Early studies using PHRs in mental health were limited to patient and staff views in relatively small numbers of patients. Essex et al (1990) used the record in a patient group suffering mainly from a psychotic illness in southeast London. Eighty-four patients used the record over a period of up to 18 months. Patients were positive about using a PHR, with usage being poorest among patients with paranoid ideation and those who did not accept they had a mental illness. Reuler & Balazs (1991) encouraged 28 homeless people with a mental illness in east London to use a PHR. Again the record was used by most patients and was approved by a majority. Stafford & Laugharne (1997) introduced the PHR to patients in an east London community mental health team (CMHT). Fifty-six patients took up the offer, most (50) suffering from a psychotic illness. Of 45 patients interviewed after 2-14 months (mean 6 months) using the record, over 80% found the record and the information it contained useful. Compared with CMHT notes, 74% of face-to-face contacts were recorded in the PHR. These patients were approached for interview again 5 years later (Stafford et al, 2002). Although only 19 patients were seen, 12 were still using the record and of these 12 records, 72% of CMHT contacts were recorded in the PHR. Although this study involves small numbers, it demonstrates that PHRs can be sustained over 5 years in a naturalistic, rather than a research, setting.
Two randomised controlled trials of a PHR have been conducted over the last 5 years. Warner et al (2000) conducted a cluster-RCT involving 90 patients with a 12-month trial period. Patients had long-term mental illnesses, with more than 50% having a functional psychosis. The PHR did not improve outcomes in admissions to hospital, clinical symptoms or patient satisfaction. Only 44% of the PHR group said they had used the record. Patients with a psychotic illness were less likely to use the PHR and both patients and staff were reluctant to use the record.
Lester et al (2003) also used a cluster randomised controlled trial method for their study. However, their patient population specifically had schizophrenia, and the perspective was from primary care. The patient sample was large, at 201, and follow-up was again 12 months. Again no difference between users of the PHR and non-users was found in outcomes in terms of symptoms, service use and patient satisfaction. However, 69% of patients in the PHR group used the record and of those, 61% had been regularly used by their keyworker. Patients were less likely to use the record if they had a higher symptom score.
Several controlled trials of a PHR in cancer care have been reported recently (Drury et al, 2000; Williams et al, 2001; Cornbleet et al, 2002; Lecouturier et al, 2002). It is interesting to note that in common with trials in mental health, the PHR did not result in benefit in terms of patient satisfaction or clinical outcomes when compared with the control group. However, patients felt that they did benefit from using the PHR.
Arguments for and against PHRs
The RCTs have not shown any overall benefit in clinical outcome when patients are allocated a PHR, and thus the extra documentation might not be justified in terms of benefit. However, the findings of the early, non-randomised studies of PHRs suggested that those patients using them appreciated having their own record in that it gave them a sense of ownership in their care. The use of the PHR is also sustainable over time among such patients. In the randomised trials many patients allocated the PHR did not actually use it, for reasons that have not been studied in any detail. It could be that there are benefits detectable by the outcome measures used but that intention-to-treat analyses result in these benefits not being apparent, because of high rates of non-use. It is also possible that some benefits to patients who use the records are undetected by the outcome measures used in the trials. If the goals include empowerment and improved communication (Laugharne & Stafford, 1996) then it could be argued that these should be measured more directly, rather than the use of possibly distantly related measures of patient satisfaction and use of services. For example, an empowerment scale has been developed for use among users of psychiatric services (Rogers et al, 1997; Wowra & McCarter, 1999). It must be noted that most of the patients in these studies have had a psychotic illness, so the results apply only to that population and not to those without psychosis.
- © 2004 Royal College of Psychiatrists