By Laura Landro

Patients typically have no idea what their doctor jots down about them after an office visit, and rarely read those notes, even though they have the legal right to do so.  Now, an ambitious project called OpenNotes aims to change that, by giving patients access to the notes recorded after every medical encounter, according to today’s Informed Patient column.

In a paper published today in the Annals of Internal Medicine, researchers detailed the decidedly mixed reactions they received in the planning stages of the project, when they surveyed doctors and patients on their attitudes about opening doctors’ notes to patients. In an unusual move, they are now widening that net, offering both medical professionals and the lay public the opportunity to weigh in with their own reactions in an online survey and on the Annals website.

“We very much want to gather both attitudes and expectations from as many people as possible,” Tom Delbanco, the project’s principal investigator, tells the Health Blog. Delbanco, a Harvard Medical School professor who sees patients at Beth Israel Deaconess Medical Center, says the public survey is based on one that was administered to 115 participating doctors and more than 8,000 patients. “We thought it would be fascinating to have it fielded as widely as possible, both for people to test their own views and, at some point, to report on what they tell us,” he adds.

The OpenNotes project is part of a growing effort to improve doctor-patient communication and involve patients more closely in their care, in part by taking advantage of the easy access to health data provided by electronic medical records. In addition to Beth Israel, Geisinger Health System in Danville, PA, and Seattle’s Harborview Medical Center are participating in the project.

The Annals paper covers many of the pros and cons doctors and patients anticipated would come of the project.  Reading doctors’ notes might help improve patients’ understanding of their medical condition, make them more active participants in their care and help them better prepare for the next visit — making for more efficient and effective office encounters. Respondents also suggested that patients might be able to spot errors or misunderstandings in the record, and that doctors might complete their notes in a more timely manner if they knew they had to show them to patients.

But Delbanco’s team turned up plenty of perceived disadvantages as well, including possible patient confusion or misunderstanding of medical terms, concerns about breaches of privacy and security and more post-visit demands on doctors’ time to address patients’ concerns about their notes. And of course, there are worries that patients might take offense at some of the abbreviations doctors use — ike SOB, which means Shortness of Breath to a doctor but might understandably be misunderstood as an insult.

Stephen Ross, a physician at the University of Colorado Hospital, has conducted small studies in which patients with chronic diseases were given access  to doctors’ notes. In and of themselves they don’t seem to help patients care for themselves better, he says, and it’s important to offer other personalized programs that assist patients directly, like helping them take their medications regularly.

But patients do appreciate the access, and making notes available “improves the culture of care and the patient-centeredness of care,” Ross says. “If patients could routinely look at their notes they could identify errors in the record, clarify any misunderstandings, better understand their doctors’ reasoning and better communicate their own preferences when they next see the doctor.”