David Blumenthal, M.D., David Squires
D. Blumenthal and D. Squires, “Giving Patients Control of Their EHR Data,” Journal of General Internal Medicine, published online Dec. 6, 2014.
Should patients be able to control the information in their electronic health records (EHRs)? Some people say the information belongs to patients, and that they alone have the right to decide who can access their data. Many clinicians counter they need unfettered access to patient information to provide the best care possible.
Writing in the Journal of General Internal Medicine, The Commonwealth Fund’s David Blumenthal and David Squires argue that patients’ right to control their own information overrides other concerns. Clinicians should think of themselves as guests in their patients’ lives and respect their rules and wishes, even those that strike them as misguided or potentially compromising well-being. There are some exceptions, note the authors, such as when patients’ decisions about their data could affect the health of others: if a person has been exposed to a public health threat like the Ebola virus, for example.
What is most critical is communicating the options that are available to patients, along with the inherent risks and consequences of withholding information. An informed consent process could enable patients to restrict the release of their information to a specific medical condition or to certain providers, the authors say. Such a system would involve technical challenges, however, and providers may need to be able to override restrictions in certain circumstances, like medical emergencies.
Health professionals must realize that if patients do not trust the health system to protect them, their relationships with clinicians will suffer, they will withhold information, and the value of their medical records will be undermined. “In the long run,” Blumenthal and Squires conclude, “clinicians as well as patients will benefit from a health information system that patients feel they can depend on to protect their privacy.”