The Road to Transparent Medical Records - Is the Future Clear?

Forty years ago, Shenkin and Warner argued that giving patients their medical records “would lead to more appropriate utilization of physicians and a greater ability of patients to participate in their own care.”1 At that time, patients in most states could obtain their records only through litigation, but the rules gradually changed, and in 1996 the Health Insurance Portability and Accountability Act entitled virtually all patients to obtain their records on request. Today, we're on the verge of eliminating such requests by simply providing patients online access. Thanks in part to federal financial incentives,2 electronic medical records are becoming the rule, accompanied increasingly by password-protected portals that offer patients laboratory, radiology, and pathology results and secure communication with their clinicians by e-mail.

Walker, J. et al; The road toward fully transparent medical records N Engl J Med 2014; 370:6-8January 2, 2014

In the first 2014 issue of the New England Journal of Medicine, Walker and colleagues describe the history of patient access to their medical records and make some predictions about the near-term future of medical information management.   

As physicians, we are already quite aware that the medical record is many things - a legal document, a financial instrument, and a regulatory tool…in addition to its primary role as a means of communication among colleagues in real time, and over time.  Given that the nearly absolute right of patients to access their own medical records has been established, it would appear that we will need to adapt to an information environment in which the medical record is also a teaching tool for the patient and family.   

The authors of this Perspectives paper go on to cite the results of a project called OpenNotes which provided full on-line access to patients at institutions including Geissinger and Beth Israel Deaconness.   They found that at the end of a year four of five participating patients had read their notes, two of three reported improved medication adherence and a large majority noted better understanding of their disease process.  Perhaps most striking was the finding that despite some privacy concerns, fully 99% of the 20,000 participating patients surveyed wanted OpenNotes to continue after the one-year project. Physicians, by contrast, varied in their attitudes, with some preferring an option to hide some notes, although concerns diminished significantly over the course of the project. In general there was concern about four conditions - cancer, obesity, substance abuse and mental illness.  Even in connection with these domains, however, open access was generally successful.  

As part of the second wave of the federal Meaningful Use standards (with attached dollars for physician practices and hospitals), we will be obligated to provide patient portals, with access at least to laboratory, imaging and related data.  At our hospital and across our Health System, there are plans to launch such a Portal by the third quarter of 2014. Undoubtedly, access to our notes is next.  

What do you think?  Is this a help, or a hindrance to providing the best care we can?  Share your thoughts in this "open access" forum!