JMIR Publications

ABSTRACT

Background:

Patient accessible electronic health records (PAEHRs) represent a global movement towards increased patient empowerment and participation in the healthcare process. Sharing mental health notes is especially controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their mental health notes. Despite documented benefits of PAEHRs there is still a lack of knowledge regarding whether patients with mental health could reap similar benefits of reading their notes as other patient groups.

Objective:

To examine mental health patients’ usage, attitudes and experiences reading their mental health notes online and, moreover, whether their experiences differ from other patient groups’ and if so, how.

Methods:

The study is based on a national patient survey with answers from 2587 patients from differing patient groups. 504 respondents (19.5 %), indicated that they suffered from a mental health disease. Answers from this group of mental health patients were compared to the answers from all other respondents. Survey questions related to attitudes, information usage and effects on contacts with care were selected for analysis. Mann-Whitney U-tests were used to detect group-wise differences.

Results:

Mental health patients use PAEHRs for checking that they have received the right care (Mean_psych = 2.83, Mean_others = 2.62; P = .002) or suspected inaccuracies (Mean_psych = 2.55, Mean_others = 2.31; P = .001), blocking access for professionals in other specialties (Mean_psych = 3.43, Mean_others = 3.04; P < .001) and checking which care professionals have accessed their record (Mean_psych = 4.28, Mean_others = 4.05; P < .001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of mental health patients (Mean_psych = 3.38; Mean_others = 3.52; P = .02) believe that PAEHRs help them in shared decision making compared to other patient groups.

Conclusions:

The study shows that the mental health patients that took part in the survey, as a group, express some minor differences in both usage of the PAEHR and their experiences regarding its usefulness, as compared to other patients, as a group. This patient group shows a slightly bigger interest in two types of usage: checking for accuracy of care and information in the record and blocking access to mental health notes for professionals from other parts of the healthcare system. Compared to other patient groups, these patients are less likely to experience that the PAEHR is a support in shared decision making (aid in contact) between patient and doctor. Overall, the study indicates that the benefits of PAEHR on a general level is the same for this patient group as for other types of patients. The study does not support clinicians’ worry about possible harm to this patient group. Further research is however needed.