PHR data overload, legal liability concern docs

Part one of a two-part series (access part two here):

Like a recurring dream about having to take a test they didn't study for, some physicians view the idea of patients with electronic personal-health records as their own personal nightmare.

Visions of patients handing over a computer disk containing years' worth of blood-pressure readings taken every four hours along with random recollections of rashes and muscle strains that physicians are required to somehow make sense of and memorize are followed by thoughts of being sued because there was a kernel of important information missed in the deluge.

"That's why folks like me are terrified of personal health records and what patients will bring to us," internist Michael Zaroukian said earlier this year during a panel discussion at the Integrating the Healthcare Enterprise Connectathon, an event that brings electronic medical-record vendors together to solve interoperability problems (and sponsored by the Healthcare Information and Management Systems Society, the Radiological Society of North America and the American College of Cardiology).

While Zaroukian, who is chief medical information officer at Michigan State University, is now backing away from the word "terrified," he still maintains "there are certainly lots of reasons to be concerned."

The reasons for concern that Zaroukian cites include: the accuracy, completeness, usefulness and volume of the records physicians receive from patients; the hours of uncompensated work it will take to slog through them; and the potential for a misdiagnosis if something important was overlooked.

"In some ways, it's simply an electronic extrapolation of what we've seen in the paper world," Zaroukian says. "The greater the volume, the more likely it is that relevant data will be lost."

Zaroukian certainly isn't the only physician who feels this way.

"He has every reason to be frightened by that, and I don't see what he is describing as an improvement over someone bringing in an entire paper chart," says Joseph Heyman, a gynecologist and an American Medical Association trustee. "I don't blame a physician for worrying about that. I think the beauty of a personal health record is if it's a snapshot of a patient and their most important demographics—like their current condition, allergies and medications—that's entirely different from their entire medical history for their entire life."

Peter Basch, medical director for e-health at MedStar Health in Washington, says "physicians love a (hospital) discharge summary" that gives one to two pages of key points. What they may get from a PHR, however, could be something that has no resemblance to a discharge summary at all.

"Electronic records make it easier to share more information and images, so often what could be included on one page is now included on 10 and 12 pages," says Basch, an internist who serves on the medical informatics subcommittee of the American College of Physicians.

He says, though imperfect, a quick two- to three-minute oral history taken during an office visit can be more helpful than an extensive PHR.

"It's like saying to a patient: 'Tell me about the rash,' " Basch says. "Don't give me a seven-hour history of every rash you've had in your life."

Zaroukian says that while things like patient-recorded blood-pressure readings can be useful, the value is not in each particular entry, but in the average and the range of high and low readings.

He says diabetic patients often give him diaries of insulin doses and pre-breakfast blood-sugar levels recorded in meticulously arranged rows and columns, but—despite their neat appearance—the numbers are not distilled into a useable format.

"You have to skip between rows and try to average the numbers somehow, but it's impossible," Zaroukian says. "The data is so poorly organized that it not only does not improve quality, it could contribute to making a bad decision."

Nevertheless, he says that PHRs could be an important tool in developing a partnership with patients, so he "gently forces" them to use the spreadsheets—either paper or electronic—that he has developed.

"Over time, patients see how their own self-management can be improved, so over time they become more interested in doing so," Zaroukian says. He adds that the key is to make it easy to record the information in a usable format so the patient-maintained record is not "just a few jewels of data floating in a sea of debris."

Organization and quality of the data are paramount to making the PHRs useful, says Heyman, who has a solo practice in Amesbury, Mass.

"I think at the AMA, we believe there can be great value to PHRs and they can save physicians and patients a great deal of time, while helping to avoid medication errors and duplicate laboratory tests," he says. "But there is a risk of 'garbage in, garbage out,' and if the record is populated by the patient, there are errors of understanding that can be inputted by the patient."

Basch says it's not the PHR alone that will create savings or improvements in care or efficiency, but it could be the tool that helps a motivated patient achieve those results. In fact, all the information included in the popular physician-provided PHR iHealthRecord from Medem, a San Francisco company founded by the AMA and several other medical societies, is entered by the patient (although if patients choose they can have data automatically flow into their PHR as it is entered in their physician's EMR system).

"Some patients will rise to the occasion, and some won't," he says. "But for patients with diabetes, hypertension or congestive heart failure, daily or weekly recordings of blood pressure and weight could result in useful information that could stem chronic conditions from going bad and save a lot of ER visits."

And, for these patients with chronic conditions, Basch cites key barriers to primary-care physician involvement in helping develop and maintain a patient's PHR: a lack of reimbursement for coordination of care among specialists; uncertainty over the legal responsibilities of helping a patient maintain a PHR; and knowing what the record contains.

"With personal health records, one of the issues is the core problem of financing healthcare where information management and discussions with patients are poorly reimbursable in the context of an office visit," he says. "Those are currently seen as an uncompensated burden on physicians."

Making sense of complicated and unorganized records can require four to five hours of work—whether the records are on paper or in an electronic format—Basch says, but this is accepted in most sectors because "there's an unwritten rule that a primary-care physician's time is not relevant and that information management isn't really work."

"There's no payer who will say: 'Sure, I'll pay you for your time'; they'll say 'Too bad, learn how to do it in 60 seconds,' " Basch says.

Steven Waldren, director of the American Academy of Family Physicians' Center for Health Information Technology, says PHRs haven't caught the attention of most doctors yet. But for the relatively small portion of physicians who have implemented electronic records, PHRs are known entities and these doctors' main concern is on workflow.

Establishing PHR data standards—what information to include and in what format—will be important to solving workflow and data-management problems, Waldren says, adding that it's time for physicians to get familiar with PHRs.

"PHRs are here and will continue to be," Waldren says. "If the healthcare consumer empowerment trend continues to move in the direction it's moving, we'll continue to see growth in the tools available for patients."

Waldren mentions healthcare decision-support applications as one of the tools patients are going to be using soon, and this prediction is already coming true. Earlier this month, Verizon Communications announced it was offering PHRs to 900,000 of its employees, retirees and their family members, and the system would include alerts that would inform users when their care "may not be consistent with evidence-based medicine."

See tomorrow's edition of HITS for part two.

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