Patients strongly support access to clinical notes
■ Some physicians, on the other hand, express concerns about safety, communication and education.
When Harvard Medical School researchers came up with the idea to open up clinical notes to patients as an experiment, their first step was finding out how people felt about the idea -- and what they expected to happen as a result.
What they found were near-unanimous support from patients and opinions from physicians that ran the gamut -- enthusiasm to fear for patients' safety.
The OpenNotes project launched in 2009 as an experiment at primary care practices at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania and Harborview Medical Center in Seattle. At the start of the experiment, 37,856 patients, 110 participating physicians and 63 nonparticipating doctors were asked about their expectations, fears and thoughts on what would happen if physicians' clinical notes were open and made available for patients to read. Results of the survey were published in a paper that appeared in the Dec. 20, 2011, issue of Annals of Internal Medicine.
Jan Walker, RN, an instructor of medicine at Harvard Medical School, said it was somewhat surprising to see that patients, regardless of income, race, location or tech-savviness, expressed near-unanimous support for the project. Meanwhile, physicians were all over the board in terms of what they thought opening clinical notes to patients might mean for patient safety, communication and patient education. Some physicians agreed to participate, despite their concerns.
Overall, 69% to 81% of participating physicians and 92% to 97% of participating patients thought it was a good idea to open the clinical notes; 16% to 33% of nonparticipating physicians thought it was a good idea. The range of percentages for each group reflect the variance in answers among the three sites in the project.
Of those physicians who did not participate, a large number thought, at best, it wouldn't be helpful. At worst, it would actually be harmful to them or their patients, or both. They worried that the notes would be confusing to patients, or that they would alter what they wrote in anticipation of the patient reading it. Physicians, especially those who declined to participate in the experiment, were far more worried about negative consequences than patients, according to the survey.
In an analogy about OpenNotes he says resonates with physicians, Tom Delbanco, MD, an internist at Beth Israel Deaconess Medical Center in Boston and professor of general medicine and primary care at Harvard Medical School, said it's "like a new medicine. It's designed to help most people. It will have side effects, and a few people will be hurt by it. We'll have to learn to use it properly, both patients and doctors. It's expensive now, with the portals, but will become cheaper ... [But] if you look at the greater good of the greater number, if it's a powerful medicine, which we think it is, and it helps a hell of a lot of people, that's a big breakthrough."
David Ives, MD, an internist and infectious diseases physician at Beth Israel Deaconess who said he enthusiastically signed up for the project, thinks the experiment was a rousing success. "The patients loved it, and it had absolutely no impact on me really at all. It was amazing how little impact it had."
He said there were a few situations that hinted at the positive impact this could have on patients. One example was a patient who told him she noticed that he called her overweight in his notes. "And I am waiting for the next beat, and then she says, 'So I lost 10 pounds.' That's not a bad thing," he said.
Walker said it was interesting to see what the patients thought they would gain by having access to the notes. Ninety percent thought they would feel more in control of their care, and half thought they would share their notes with other people, including family members, spouses and other physicians and nurses.
The system is still up and running at Beth Israel, and results from the post-experiment survey are being analyzed. Walker said she hopes to take the results of that survey to physicians who declined to participate initially and ask them if the results have changed their minds. She hopes to have the post-experiment results ready for publication in the spring.
A companion piece in the same issue of Annals of Internal Medicine showed results of a survey conducted of users of the U.S. Dept. of Veterans Affairs' PHR system, My HealtheVet. The survey found almost four out of five respondents were interested in sharing access to their PHR with someone outside of the VA health system, including a spouse or partner (62%), a child (23%), another family member (15%) and a non-VA health care professional (25%).
Walker said the next step is to analyze survey results from physicians and patients post-experiment to see how attitudes and opinions have changed. As a positive sign, when they went back to physicians at Beth Israel after the year-long experiment ended and asked if anyone wanted the system turned off, no one said yes.
An editorial by Thomas Feeley, MD, vice president of medical operations at University of Texas MD Anderson Cancer Center, and Kenneth Shine, MD, executive vice chancellor for health affairs at the University of Texas System, said there have been no adverse consequences after two years of a similar project at MD Anderson. They wrote that there has been little promotion of the site to patients, but more than 40,000 have accessed records more than 605,000 times.
"Despite physician concerns that the system would increase workload and create unnecessary anxiety for patients, few have voiced complaints since the system went live in May 2009," they wrote in the piece that also appeared in the Dec. 20 issue of Annals of Internal Medicine.