Study: Patients have mixed views on EHR sensitivity and which data is OK to share

The perceptions surrounding which information disclosed in patient medical records is sensitive can impact a patient's willingness to share their health data for care and research, according to a recent Journal of Biomedical Informatics study.

For the study, Phoenix-based Arizona State University researchers developed a mixed-method approach to assess patients' perceptions on health data sensitivity and their willingness to share their data.

The research team recruited 25 participants with behavioral health conditions for the study. The participants gave the researchers consent to access their EHRs, including information available through the state's health information exchange. The participants were asked to sort which information from medical records they considered sensitive and which pieces of information they would be willing to share. The researchers personalized each participant's exercise based on the individuals own EHRs, using 30 items from their patient records.

Results of the study showed that participants were able to recognize 82 percent of the 30 items from their own EHRs. When it came to classifying information, participants considered mental health (76 percent), sexual and reproductive health (75 percent) and alcohol use and alcoholism (50 percent), as sensitive data.

Regarding data sharing, participants were willing to share information that related to addictions other than alcohol (100 percent), genetic data (95.8 percent) and general physical health information (90.5 percent).

Researchers concluded that patients' opinions on EHR sensitivity and data sharing are diverse, but knowledge of patient views can help providers develop robust consent technologies to inform sensitive data sharing policies.

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