JMIR Publications

ABSTRACT

Background:

Previous research report that patients with mental health conditions report benefits, e.g. increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). Still, in mental healthcare, PAEHRs remain controversial as healthcare professionals are concerned that patients feel worried or offended by the content of the notes. However, research on the prevalence of negative experiences with PAEHRs among mental healthcare patients and how that compares to other patients is lacking.

Objective:

To establish if and how experiences of patients with and without mental healthcare differ in using their PAEHRs, by 1) comparing patient characteristics and differences in using the national patient portal between the two groups; and by 2) establishing group differences in the prevalence of negative experiences e.g., rates of errors, omissions, and offence between the two groups.

Methods:

The analysis was performed on data from an online patient survey distributed in the Swedish national patient portal, as part of NORDeHEALTH’s international research project. The respondents were patient users of the patient portal, at least 15 years old, and categorised either as those with mental healthcare experience (mental healthcare, MH) or with any other healthcare experience (non-mental healthcare, non-MH). Patient characteristics included gender, age, education, employment, health status. Portal use characteristics included frequency of access, encouragement to read the record, instances of positive and negative experiences. Negative experiences were explored through rates of error, omission, and offence. Data were summarised through descriptive statistics. Group differences were analysed through Pearson’s chi-square.

Results:

Of the total sample (N=12,334), MH respondents (n=3131) experienced errors (50.65%; non-MH 35.98%), omissions (34.78%; non-MH 26.37%) and offences (37.78%; non-MH 17.56%) in the electronic health record at a higher rate compared with non-MH respondents (n=9203). Respondents reported that the worst identified error (MH 50.13%; non-MH 41.26%) and omission (MH 57.12%; non-MH 51.76%) were ‘very important,’ but most did nothing to correct them (MH 41.29%; non-MH 42.17%). Most of the respondents identified as women in both groups.

Conclusions:

About 1 in 2 mental healthcare patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MH group. MH patients also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). At a glance, these findings validate some of healthcare professionals’ worries about providing MH patients with PAEHR. Notably, it is not clear why MH patients had different experiences and how it impacted them. Further research is necessary to investigate the implications. Clinical Trial: Not applicable.