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American Way

Portal of Good Health

E-books. Digital magazines. Paperless billing. As everything else in the world has gone digital, it only makes sense that our health records would too. (2012)


By Charlotte Huff

Nancy Sandman, a psychotherapist from Brookline, Mass., a suburb of Boston, jokes that she has a "basic trust" issue where computers are concerned. She doesn't own an e-reader, and she only recently purchased a smartphone. So when Sandman's family doctor told her that she could view some of her medical information electronically, she wasn't very interested. Until one day when her insurance company called and labeled her a "newly diagnosed diabetic."

"I went immediately online then," she recounts, alarmed at the news. Within minutes, she was tapping computer keys, sifting through recent lab results and diagnoses, until she was reassured that her blood-sugar readings hadn't appreciably changed. Sandman, who remains prediabetic, now regularly checks her lab work online and, since 2010, even reads up on her doctor's progress notes. "It gives me control," the 69-year-old says. "There are no surprises."

Doctors around the country are finally moving into the computer age and shedding bulging cabinets of paper charts for software packages -- a long-awaited shift that's been accelerated in large part by a 2009 federal stimulus law tied to electronic-record adaptation that included as much as $27 billion in physician and hospital incentives. According to survey results released late last year by the Centers for Disease Control and Prevention, 52 percent of office-based physicians plan to take advantage of those incentives. For some patients, this computerized shift is already making it easier to stay on top of their own care -- with a few keystrokes, they can schedule convenient appointments through a secure online system, request a medication refill or ask the doctor whether a nagging sore throat necessitates an office visit.

Boston's Beth Israel Deaconess Medical Center, where Sandman's doctor works, has even gone so far as to join forces with two other U.S. medical facilities to study what happens when patients are provided a virtually unrestricted online window into their own medical record through a "patient portal." (The Star Trek-sounding term describes a secure electronic gateway through which patients can view, to varying degrees, their own medical information.) During the center's one-year study, some 20,000 participating patients have been able to not only look up diagnoses and test results online but also review their doctors' notes.

Other institutions have also significantly expanded electronic access. Kaiser Permanente, which has 3.7 million health-plan members registered with its online portal, rolled out a smartphone app earlier this year so users can access their records from anywhere. And Palo Alto Medical Foundation, in Northern California, which had at least 70 percent of its 470,000 adult patients using its online portal by late 2011, recently completed a study (the results of which haven't yet been published) where diabetic patients transmitted blood-sugar readings from home glucometers via their cellphones to their electronic health record. During the three-year study, half of the 415 participants (those in the "intervention group") monitored their blood-sugar patterns online to see how they were affected by diet, exercise and medication. "Seeing what happens with your own behavior is a powerful influence," says Dr. Paul Tang, the medical foundation's chief innovation and technology officer.

But even enthusiasts acknowledge that giving patients access to their own medical records will likely cause various ripple effects that could influence everything from patient knowledge to medical treatment itself. Among some of the questions and uncertainties: Will patients understand lab findings and other medical jargon? Will they freak out if they read something unsettling? Will doctors change what they write, knowing that their patients might read the information?

"I worry that if we start leaving those things out in order to make the medical record more understandable for the patient, we could potentially be leaving out important information that would be understood only by other doctors," says Dr. Russ Cucina, medical director of information technology at the University of California, San Francisco.

Patients can already request a copy of their own paper medical record. But it's traditionally been a time-consuming process, frequently with fees attached to discourage easy review, says Dr. Tom Delbanco, an internist at Beth Israel and a professor at Harvard Medical School. "Quite frankly, we've made it as difficult as possible for most patients," he says. Delbanco is one of two principal investigators on the study of the Beth Israel patient portal, a study which provides participating patients free access to their electronic records at Beth Israel, Geisinger Health System in Danville, Pa., and Harborview Medical Center in Seattle. In all, 254 primary-care physicians at the three facilities were given the option to participate because they already had the requisite technology in place. Fewer than half of them, 114 physicians, signed on.

"The doctors who declined to participate were much more worried about the impact on their time," says Jan Walker, a researcher, a registered nurse and the other principal investigator. "And they were less optimistic about the benefits to patients."

The investigators have tracked feedback and other results, such as the identification of medical errors and how well patients took their medications. They declined to share specific numbers prior to publication of the study results but stressed that none of the participating doctors dropped out because of time demands or patient headaches. According to Delbanco, while some patients have trivial questions or corrections -- for example, noting that they play baseball instead of softball -- it appears that others had their questions answered or worries assuaged by checking their medical information online. And for some, sifting through their own medical record can be educational. Delbanco shares how one patient described the experience of seeing the words obese and diabetic as bracing, to say the least.

"My doctor does not confront me -- he's polite," says Delbanco, reading the patient's comment. "But seeing it in writing is a punch to the stomach -- it makes me face reality."

When doctors changed what they wrote, they tended toward shorter words and more educational language, Delbanco says. Personally, Delbanco no longer uses SOB -- doctor lingo for "shortness of breath." And rather than writing that a patient has heart failure, which could cause undue alarm, he might instead describe the heart as "not pumping as well as it might."

Occasionally, though, the data dump can be confusing or misleading, acknowledges Sandman, a psychotherapist. When she initially signed on to check her blood-sugar readings, she noticed that a kidney-function result was highlighted as outside the normal range.

"I know that it [kidney function] is related to diabetes, and I thought, 'Oh, I'm dying,'" Sandman recalls. It wasn't until a subsequent doctor visit that Sandman learned that her kidney results were just fine for someone her age.

Does the broader use of electronic health records improve patient treatment? Critics point to a recent study by Stanford University researchers, published in 2011 in the Archives of Internal Medicine, that found that computerized physician practices performed better on only one out of 20 quality indicators studied.

On the other hand, a battery of studies dating back to the landmark 1999 Institute of Medicine report show that doctors and hospitals do make mistakes -- and patient care can suffer. One recent example from a 2009 study, also published in the Archives of Internal Medicine, shows that 7 percent of abnormal outpatient test results never reach the patient. If patients can check their medical record online, some argue, they could provide another safety net to catch such mistakes. For instance, posting lab results electronically for patients -- following a brief delay to allow physicians to share worrisome findings first -- makes it "much less likely that an abnormal test result will fall between the cracks," says Dr. Kate Christensen, medical director of Kaiser Permanente's patient portal. "It's not the best way to find out that you have an abnormal result," she says, "but it's better than not finding out at all."

Establishing a message system also appears to benefit patients. When women who were due for a mammogram at the Palo Alto Medical Foundation were sent automated reminders through a secure system to schedule their appointment, 4.5 times as many got the screening test within three months, compared with those who weren't notified, according to Tang, citing an internal analysis. At Kaiser Permanente, a two-month study published in 2010 in the journal Health Affairs reported that secure email interaction with physicians was associated with better diabetes and blood-pressure readings among more than 35,000 patients.

Delbanco, who is clearly bullish about virtual medical records, envisions a day when the patient's record will become a "living document" to which patients and doctors add their own details and perspective. "I think EHRs [electronic health records] are spreading with lightning speed and that patient portals are close behind," he says. "Our frank hope and expectation is that this will become the standard of care within three to five years."

The challenge will be to ensure that high tech doesn't interfere with the doctor-patient relationship. "There is, in fact, a human skill in communicating important and difficult information about health and illness and mortality and other heavy issues," Cucina says. "Mortality. Fertility. Very weighty human issues."