A must-read

HHS Secretary Kathleen Sebelius has taken an important step in launching the first national effort to give consumers electronic access to their laboratory results. We certainly agree with the secretary that “When it comes to health, information is power.”

But at a time when all Americans are increasingly relying on electronic technologies to access information they need to make important decisions, we urge the government, other payers, clinicians and consumers to move even further forward. If consumers are to become truly active partners in their own healthcare, they should be able to retrieve their personal medical information readily, including their doctors' notes. As doctors and hospitals increasingly use information technologies to embrace transparency and information-sharing, let's move toward “open notes” and adopt them proactively and eagerly, rather than with mumbling and grumbling.

While patients are allowed to request and review their medical notes under the 1996 Health Insurance Portability and Accountability Act, few take advantage of that option, and few doctors invite patients to do so as a matter of routine. When patients request such review, it's often an arduous and at times expensive task. According to a 2011 survey by the Markle Foundation, only 6% of patients ever ask for copies of their personal health information or medical records in an electronic format. In many respects, health professionals have erected an invisible but substantial wall between what they know and write and what the patient may see. And this pattern persists at a time when “shared decisionmaking” gains more and more attention.

As a primary-care doctor with 40 years of experience with patients, teaching and studying health services, and as a nurse who promotes the use of information technology to improve care, we understand that engaging patients actively in promoting health and managing illness is a long-standing but elusive goal of healthcare. We also believe that giving patients access to their own medical notes may help them manage their care more effectively and join in efforts to detect and prevent medical errors.

Through OpenNotes, a project funded by the Robert Wood Johnson Foundation, we are testing the impact of this idea with more than 100 primary-care doctors and 21,000 patients in three very different settings: an urban teaching hospital and associated community-based practices (Beth Israel Deaconess Medical Center in Boston), primarily rural practices (Geisinger Health System in Danville, Pa.), and clinics at a safety net urban hospital (Harborview Medical Center in Seattle). We are learning that patients are overwhelmingly interested in gaining rapid access to their notes and that many doctors appreciate the potential for open records to improve care.

The enthusiasm of patients appears to cut across all lines of age, health status and education. And while many doctors turned down our invitation to join the one-year project, citing fears that their notes would adversely affect their already onerous work flow and frighten or confuse patients, only one doctor who signed up for the study later dropped out, and that was for personal reasons.

Moreover, hallway conversations indicate that doctors have not experienced significant disruptions to their work, an impression consistent with several earlier, albeit smaller studies focusing on subspecialists caring for patients with diabetes or heart failure. One doctor who was initially very hesitant told us recently that she feels “much safer” with her patients reviewing what she writes, and others tell us that some of their patients appear far more engaged and are excited by what they view as improved and more open lines of communication.

The ramifications of inviting patients to read their medical notes are complex. Will doctors be more likely to complete encounter notes in a timely fashion and ensure that they are accurate? Will open notes improve patient adherence to medical regimens? Patients often remember little of what happens in the doctor's office or leave overwhelmed by what they have been told; will they download the record and digest its contents?

How will doctors and patients address issues such as substance abuse, mental health, obesity and cancer once records become an open book? Will patients share their doctors' notes with others? The doctor-patient relationship is confidential, but with open notes, it's up to the patient whether it will be private. Will downloaded or forwarded notes spawn a raft of second opinions, involve families and other informal caregivers more actively in supportive care, or affect the likelihood of medical error and litigation?

Our expectation is that the short- and long-term benefits of open notes will far outweigh the harms.

But whether one favors or opposes this idea, patients, policymakers and clinicians who think about the next generations of patients and caregivers agree that such evolution in care is almost certainly inevitable. Transparency is here to stay, and we in the medical professions can choose either to shape the future or try to stem its evolution. If we work carefully toward open notes with those we serve, we suspect we'll come up with a “win-win” for all concerned.

Dr. Tom Delbanco and Jan Walker are clinicians at Beth Israel Deaconess Medical Center, Boston, and teach at Harvard Medical School.