AMA Journal of Ethics^®

Mandl KD, Szolovits P, Kohane IS. Public standards and patients' control: how to keep electronic medical records accessible but private. BMJ. 2001;322(7281):283-287.

Throughout business, government, and academia, information management systems are converging rapidly with emerging communication technologies, resulting in unprecedented access to data and information, almost anywhere, and at any time. In medicine, personal medical records once kept in filing cabinets are now stored in computerized databases and transmitted to distant sites via the Internet and other technological means. More importantly, the "technical infrastructure" underlying the digital storage and transmittal system makes it possible to bring together disparate pieces of an individual's medical record that is tracked and identified by the equivalent of a medical social security number.

In this month's journal article, "Public Standards and Patients' Control: How to Keep Electronic Medical Records Accessible but Private," the authors argue that, beyond simply improving data accessibility and standardization, electronic medical records provide patients with greater control over their personal health information. For example, patients may be better able to access and correct inaccuracies in their medical records. However, with greater access to medical information, the privacy and confidentiality of patient health information is at potential risk. Therefore, the authors propose two doctrines to guide the development of electronic medical records in the Internet era. The first doctrine is that a public standard should be developed to regulate the storage and exchange of data, and groups including the AMA are striving to establish such policies; and the second is that patients should have control over who has access to their medical record information.

Discussion Questions

1. Do you think the potential benefits of improved information flow and access to patient medical records outweighs the potential harms to patient informational privacy and confidentiality?
2. Should patients be able to alter their online medical records? Should they be able to note disagreements with what appears on the record? Should they have "read only" access?
3. Would patient access to their electronic medical record have either a positive or negative influence on the patient-physician relationship?