JMIR Publications

ABSTRACT

Background:

Patients’ access to their electronic health record (EHR) supports patients’ participation and satisfaction with care. Despite the benefits, some patients have been upset after reading their EHR. Additionally, health care professionals are concerned that patients, particularly those with mental health conditions, may be offended and they have expressed need for further guidelines to write EHR. Experiences among various patient groups are essential to support relationship between patients and professionals.

Objective:

This study aimed to determine if some groups of patients are more likely to feel offended while reading their EHR and which information is perceived as offensive.

Methods:

The cross-sectional survey study was conducted using a web-based patient survey via the Finnish national patient portal adopting a mixed-method approach. The survey included multiple-choice and open-ended questions. The total sample was 4681 respondents. The survey respondents were placed in four patient groups: patients who had received care for mental health, cancer, other conditions, and had no care. Associations between the type of care and the patients who felt offended were calculated using the multivariate binary logistic regression analysis. Inductive content analysis (N=502) was performed to identify the information that was experienced as offensive in the EHR.

Results:

The patients who had received any mental health care (23.1%–25.4%) were more likely to be offended by information in their EHR compared to the other groups (9.9%–11.6%; Other care: OR = 0.389, 95% CI = [0.321, 0.485], P<.001; Model A). Additionally, female patients, those with bad or very bad health condition, and patients with bachelor or master level degree were significantly more likely to feel offended. Errors, the health care professionals’ disrespectful language, and perceived unnecessary information were the most frequently mentioned reasons for being offended. The patients with mental health care reported more often that unnecessary information and professionals’ opinions and word choices were experienced as offensive compared to the other patients.

Conclusions:

This study provided valuable insights into the types of information that patients experienced as offensive in their EHR. While a minority of patients felt offended by their EHR, health care professionals and EHR developers and designers should consider that some patients, particularly those who have received mental health care, may feel offended by certain information or word choices in their EHR. To address this, health care professionals should receive education on how to write their notes using a neutral tone. Improving the quality of EHRs may also strengthen the relationship between patients and professionals.