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Should Doctors Share Notes with Patients?

 |  By jcantlupe@healthleadersmedia.com  
   December 29, 2011

To share notes, or not to share—that is the question.

What would happen if physicians' notes about patients were actually read by patients? Would it cause an onslaught of worry, anxiety, and extra work for already over-extended physicians? Could those notes become a catalyst for patients' cooperation in their own care?

It depends upon whom you ask.

After studying nearly 173 primary care physicians who shared notes with more than 38,000 patients at three hospitals, researchers found that patients were enthusiastic about the note sharing, but physicians less so.

"The response among physicians is a mixed bag; some are cautiously optimistic and quite a few are opposed," Tom Delbanco, MD, and Jan Walker, RN, MBA, research partners at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston, MA, and several co-authors, write in the December issue of the Annals of Internal Medicine.

The researchers divided physicians into two groups: those who participated in the note-sharing study and completed an attitude survey, and nonparticipants who only filled out the survey, but declined to engage  in the note-sharing process.

Overall, as many as 81% of participating physicians thought open visit notes were a good idea, but only 33% of the nonparticipating doctors felt they were, the report said.

However, patients were overwhelmingly enthusiastic about the note sharing, with 97% believing it would improve their understanding and involvement in their own care. Patient enthusiasm extended across age, education and health status, and 22% anticipated sharing their visit notes with other people, including  doctors.

Physicians were mostly concerned about their notes having one major negative impact on patients: Giving them cause to worry.

While most (58%) of the participating physicians expected that open notes would result in greater angst among patients, far fewer patients (only 16%) concurred. As many as 92% of the nonparticipating physicians anticipated more worry among patients.

Delbanco and Walker hope someday it will be routine for primary care physicians to share with patients their notes about doctor visits in a process, they write, that could "transform the patient-clinician relationship." It's certainly not routine now.

While hospitals and healthcare systems with electronic medical records are increasingly allowing patients to view laboratory results, medication lists, and other parts of the medical record, patients rarely have easy access to notes written about them by clinicians, according to the researchers.

Walker and Delbanco believe that's a mistake. If more patients were able to see and review doctors' notes, they could use the information to make decisions about their health, and manage their illnesses better, the researchers said in an interview with HealthLeaders Media.

"We're saying there's this 'black box' of the doctor's notes that patients really aren't privileged to read, and we think that's ridiculous," says Delbanco, a primary care physician who created the Division of General Medicine and Primary Care at Beth Israel Deaconess, a unit he led for 30 years until 2002.

As they see it, sharing notes with patients is a simple step that could go a long way toward improving healthcare. In instances where physicians have shared written notes with patients, dialogue has ensued about certain illnesses and conditions, with the potential of improved care as a result. In addition, patients have occasionally pointed out information that physicians wrote in notes that doctors may have later neglected, with the impact of potentially reducing medical errors, Delbanco says.

To hear Delbanco and Walker tell it, the potential impact of note-sharing is similar to the use of checklists–step-by-step procedures performed by hospitals that were initiated several years ago by Peter Pronovost, MD, a Johns Hopkins clinical care specialist. Pronovost identified a rudimentary checklist of basic procedures to improve hand-washing routines and proper skin evaluation that has helped to reduce hospital infections.

The study on doctors' notes involved patients and physicians from Beth Israel Deaconess, the Geisinger Health System in Danville, PA and the Harborview Medical Center in Seattle, WA. The project, OpenNotes, is supported by grants from the Robert Wood Johnson Foundation and other foundations.

"We believe that patients get a better understanding about their care," Walker told HealthLeaders Media. "They take better care of themselves and take their medicine."

Delbanco says he has been sharing notes with patients and it has been illuminating to them as well as to him. Writing notes has clarified his thoughts about patients' conditions, Delbanco says. As for patients, some say they are more inclined to take their medication, or lose weight, for instance, after reviewing physician notes.

"We've had several patients who say to us, 'My doc's been telling me for a year to lose weight, but when you see it in the notes, that the doctor is worried, it's a different ballgame and you want to do it,'" he says.

Although note-sharing is relatively uncommon, it has been tried in certain health systems with some degree of success. The University of Texas M.D. Anderson Cancer Center in Austin, TX implemented an electronic medical records system for patients in May 2009. Few physicians have voiced concerns since the system went into effect, despite worries that it would increase workload and anxiety, wrote Thomas Feeley, MD, vice president of operations at the Texas hospital in an editorial published in the Annals of Internal Medicine. "There have been no adverse consequences and generally positive feedback."

Delbanco and Walker are continuing to study physicians' attitudes on this subject, with plans to release a follow-up report in six months. For instance, they will explore physician attitudes and how they took notes after questioning patients about specific conditions, such as obesity or cancer.

The researchers also will evaluate how often patients looked at their notes, whether they better understood their physical condition, and whether they shared the information with others. They will also address privacy concerns. Confidentiality may be the hallmark of traditional doctor-patient interaction, but open visit notes put the patient in control of whether the note will remain private, Walker says. "Those are among the questions we will have answers to in a follow-up study," Walker says.

As Walker and Delbanco continue to evaluate open notes, the debate about whether note-sharing between patients and physicians may be just beginning. At the outset, they think it should become a routine part of the framework of medical care.

 "I would love this to be a standard of care in five years. Patient engagement is a huge piece of it, and this is a simple intervention that can accomplish a lot," Walker says.

 

Joe Cantlupe is a senior editor with HealthLeaders Media Online.
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