Patients respond favorably to open records

A new study suggests that patients like having online access to their personal health information.

Published in the Journal of Medical Internet Research, the study, which consisted of focus group interviews of patients enrolled in the VA’s My HealtheVet Pilot, explored the reactions of patients who had full access to records resulting from recent doctors’ visits.

Summing up the findings, the report’s abstract notes: “Four broad themes characterized patients’ experiences with reading the full complement of their health information.  Three themes related to patients’ perceived benefits of electronic record access, and one theme focused on their concerns. First, patients reported that seeing their records had a positive effect on care communication between visits as well as during encounters. Second, access was felt to improve patients’ knowledge about their own health and prompted greater desire for self-care. Third, patients reported that health record access improved participation in their care in a variety of ways. Last, patients described challenges resulting from viewing clinical notes."

Some of the more expanded observations made by researchers:

  • “Several patients reported feeling less reliant on providers and staff to relay pertinent information during or between visits which, in turn, allowed them to avoid situations such as remembering in-person discussions or waiting for a phone call to be returned.”
  • “Access to notes was seen as a way to help prepare for clinic visits. Patients described how knowledge of record content allowed for a better understanding of what questions to ask and consequently, to improve the visit by leading to a more efficient encounter.”
  • “For many patients, access to their records increased perceived knowledge about their medical conditions and fostered a greater sense of control of their care. Several commented that seeing what was written about them prompted more efforts at self-care. Patients collectively and repeatedly discussed using the Internet to help understand medical information in their record.”

Advocates of greater patient access to records will undoubtedly greet the report positively, but some questions might be worth using as the grounds for further research.

For example, is the “can-do” attitude revealed in these responses likely to be mirrored by the general population, meaning outside the community of veterans of the armed forces?  Second, how would levels of education or income impact patient willingness to engage with their own health information?

None of this is meant to cast doubt on the findings, only to suggest that, however appealing the “democratization” of access may be intellectually, policymakers in particular should consider the possibilities thoroughly in the name of ensuring that policies designed to promote patient access are grounded in reality and not just wishful thinking.