Tag: OpenNotes

Making Sense of the Debate Over Patient Access to Medical Information

“When it comes to health care, information is power.”

This comment from U.S. Department of Health & Human Services Secretary Kathleen Sebelius has sparked a heated debate among doctors and patient advocates about the merits and drawbacks of giving patients easy access to their lab results, doctors’ notes and other personal medical information. A deliberation in this month’s issue of SGIM Forum, the newsletter of the Society of General Internal Medicine (SGIM), is emblematic of how doctors’ and patients’ views on transparency vary.

Internist Douglas P. Olson, MD says it’s too early to offer patients electronic access to their lab results or medical records and that without systemic changes it could actually undermine the patient-doctor relationship lists among his concerns the potential to confuse or worry patients; a lack of evidence showing the positive effect on healthcare safety and quality; and the increased demands on doctors’ time to respond to patient questions.

These concerns are valid and shared by many other doctors. In a recent survey by OpenNotes―a project supported by the Robert Wood Johnson Foundation’s Pioneer Portfolio that enables doctors to share their visit notes with patients online―doctors were asked about their expectations and attitudes toward sharing electronic medical notes. The survey was conducted before doctors engaged with OpenNotes. Responses revealed doctors were worried about the impact on workflow and weren’t convinced that it would make a difference to patients’ health.

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Mind the Gap

It’s a simple idea – show patients the notes that doctors write about them– but it’s also a dangerous idea … in the best sense of the word. It’s dangerous because the very idea forces a conversation and in the course of that conversation, some uncomfortable tensions surface. Jan Walker and Tom Delbanco, co-directors of OpenNotes, a project supported by the Robert Wood Johnson Foundation’s Pioneer Portfolio that enables patients to see their doctors’ notes via secure e-mail after a visit, published a preliminary set of results from their first study. Actually, it’s just a pre-study: they surveyed doctors and patients about their expectations of how the OpenNotes idea would play out. And what they found is fascinating – and uncomfortable.

Doctors and patients are clearly divided about the expected benefits and consequences of the OpenNotes intervention. On a wide range of possible benefits, ranging from a greater sense of control to increased medication adherence, doctors are more skeptical than patients. But what really jumps out are the responses to questions of whether patients would find the notes more confusing than useful, and whether the notes would make them worry more. The gap is dramatic. In each case, most doctors said “yes” while less than one in six patients agreed. Ouch. That’s a big gap and my sense is that we should be talking about what it means. From my perspective, it appears that many doctors are underestimating their patients and that this underestimation could lead to less patient engagement and ultimately poorer care. Call it a hunch.

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