Recent discussions about how electronic health records can improve healthcare delivery mainly have focused on the impact on hospitals, physicians, or nurses. Missing from this lineup: patients. A one-year pilot called OpenNotes, however, is aiming to get patients more involved in their care by letting them read their primary care physicians' visit notes online through secure Websites.
"Patients say that they're really interested in this by and large. But, one of the questions is if we open these records, will they look at them?" says Jan Walker, RN, MBA, a health services researcher at Beth Israel Deaconess Medical Center, Boston, and one of the study's lead investigators. "So thanks to computer systems, we can find out."
The study, outlined in the July 20 Annals of Internal Medicine, involves about 100 primary care physicians—who volunteered for the OpenNotes project—at three diverse organizations: Beth Israel Deaconess, an urban academic health center with community practices; Geisinger Health System, an integrated health system in rural Pennsylvania; and Harborview Medical Center, a county hospital in Seattle which serves many homeless and indigent patients.
About 30,000 patients—members of their physicians' panels--are expected to participate during a one-year period. Patients of participating physicians are alerted by e-mail when their physicians' notes are available.
Beth Israel and Geisinger, which started their OpenNote initiatives in May and July respectively, have secure, established electronic portals. Harborview Medical Center will offer its patients access to a secure online portal for the first time in September.
As expected, quite a few primary care physicians approached about the OpenNotes project expressed reservations. At the top of the list of their concerns was the effect on their time—particularly if overwhelming numbers of patients would contact them through phone calls, letters or e-mails if they had questions or comments.
Other physicians thought they would have to write notes that would be scientifically imprecise—leaving out important diagnostic and therapeutic considerations—in order to be understood by patients. Other physicians noted that they were embarrassed by their writing or uncomfortable with their typos--making them seem less professional, the researchers found.
And then, then there were those abbreviations that were confusing or likely to draw their patients' ire—such as "SOB," which in a clinical context means "shortness of breath."
Others are looking at OpenNotes as a way for patients to get something extra out of their care. Another researcher who assisted with the study, Henry Feldman, MD, says, "I wanted to do this because in Massachusetts—for a long time—we've had this rule that patients should have access to their healthcare records, but we make it very hard for them."
Feldman, who currently holds dual appointments as a hospitalist and as the chief information architect with the Division of Clinical Informatics at Beth Israel, says the "most underutilized resource" in the healthcare system is the patient.
"I think [patients] should be put to work a little bit...but not in a bad way. If you put them to work, they become engaged in their healthcare," he says. Right now, healthcare is often viewed by patients as something that "you go to and you get"--akin to going to a movie where you watch and walk out.
"You don't get involved in the process. You're a passive observer," he says. Making physicians' visit notes available might change this.
"Right now patients have no idea what goes into their healthcare. Study after study has shown that patients don't retain what we tell them in a visit," he adds. With a combination of shorter medical visits and overwhelmed patients, sometimes the discussions—about medications, symptoms, or tests—may be cut short.
Viewing physician notes may help them understand better what is going on—and may help physicians as well. "[Patients] may go into their notes, and they can actually see it: [how to] help me help them—which to me is an exciting concept," he says. "I'm not trying to solve all of society's ills, but if I can get a patient to help me help them, they'll get better care."
The results of this study, which is being funded by a grant from the Robert Wood Johnson Foundation, are another year off: The researchers will use pre- and post-viewing surveys to gauge the reactions of both physicians and patients.
For most patients at Beth Israel and even Geisinger, many patients have become familiar with using an electronic portal. "They're used to getting notified [online so] this isn't a radical shift from an infrastructure standpoint," Feldman says.
But from a relationship standpoint, "this is a disruptive technology," he quips. "For the first time, we're letting patients see behind the mask." While patients may be "underwhelmed" in the long run, "I hope it's going to spark them to become engaged—at least to try and figure out what the gobbledygook was that we wrote in the chart."
Janice Simmons is a senior editor and Washington, DC, correspondent for HealthLeaders Media Online. She can be reached at jsimmons@healthleadersmedia.com.