Patients, in theory, can access their own medical records. Yet a thicket of fees, institutional fear, and bureaucracy still stand between most patients and their medical charts.
But a new project called OpenNotes suggests there is much to gain and little to fear by sharing medical records with patients as part of treatment. A few medical centers—Boston’s Beth Israel Deaconess Medical Center, rural Pennsylvania’s Geisinger Health System and Seattle’s Harborview—recently completed the first trial of OpenNotes in which 14,000 patients were given immediate access to electronic notes by their doctors and nurses. The results, published in the Annals of Internal Medicine and the Journal of Hospital Medicine, defy decades of doctors’ concerns about hours of busy work, broaching sensitive topics and creating confusion among patients.
None of these turned out to be true. "We really did not know what would happen, so I guess we could say the project exceeded expectations," writes Jan Walker, a principal investigator of OpenNotes and medical researcher at Harvard Medical School. Patients with OpenNotes reported better care, while doctors experienced little additional work. Of the patients with access to OpenNotes, almost all opened their records, more than 60% reported they took medications more regularly and 77% said they felt more in control of their care. By the end, every single doctor opted to continue with the program, along with 99% of the patients in the program.
"I don’t think the project fell short anywhere," writes Walker. Spurred on by activists and philanthropists, the program is now going national, with backing from the Robert Wood Johnson Foundation which hopes the idea can make patients partners in their own health care.
Hundreds of thousands of patients are now set to view some or all of their records through OpenNotes, with the MD Anderson Cancer Center and the massive Veterans Association offering full transparency of health records to more than 1 million patients.
But OpenNotes faces plenty of questions, as well as a history of failed attempts to deliver a records system that satisfies patients and doctors. Previous attempts have proven unwieldy or inconclusive while failing to gain traction. And unknown complications await. "In a way we feel like we are in the Model T stage of this type of transparency," writes Walker. "OpenNotes is like a new medicine that is beneficial to most patients but will harm some; how can we identify those patients and then address the situation openly and honestly?"