Sharing patient data poses business, tech issues for radiology

Sharing patient data might be mandated by meaningful use, but specialists fear business and technical repercussions.

The title of an educational session at the Radiological Society of North America annual meeting posed a question that might not seem too controversial to many health IT advocates, but it's cutting-edge stuff for specialties: "Providing Reports Directly to Patients: Should You Do It?"

The session focused on a new open-data frontier forged by meaningful use: Specialists sharing patient data directly with patients, cutting middlemen, such as hospitals and referring physicians, out of the equation. While both HIPAA and meaningful use endow patients with these inalienable rights, the U.S. health care system still is in the process of adjusting its technologies and workflows to accommodate them.

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Perhaps the biggest change in sharing patient data involves changing old-school business practices, not cutting-edge technology or new data standards. Speaking in the session, Richard Taxin, M.D., president of Southeast Radiology Ltd. in Springfield, Pa., did some quick math, concluding that if meaningful use advocated a patient-friendly "summary report," as proposed by the Pennsylvania legislature four years ago, it could cost the U.S. health system roughly a billion dollars a year to create and distribute the reports.

"More communication might improve patient care by making radiologists more visible to patients, but some radiologists don't want to be seen," Taxin said. "It could reduce malpractice lawsuits, but maybe we're just kidding ourselves."

Thorny issues abound -- in theory

Attendees worried about how outpatient radiologists sharing patient data directly with patients might negatively affect their relationships with referring physicians, from whom income flows. They also discussed their fears of how sharing reports directly with patients could be a time sink -- either in rewriting reports to make them more comprehensible to laypeople, or in spending more time answering patient phone queries about terms they don't understand.

Curtis Langlotz, M.D., vice chairman for informatics in the Department of Radiology at the University of Pennsylvania Health System in Philadelphia, said doctors indicated they were anxious about being overwhelmed with patient calls in advance of UPenn's implementation of a patient portal last June. He said they received a total of four patient calls after 85,000 patient accounts went online in a four-month pilot at the system's 700-bed main hospital.

The experience -- and surveying patients and doctors about it -- showed him that patients want their data, something physicians have yet to understand. "The patients have a much stronger view of this than physicians think they do, in general," Langlotz said, adding that once patients accessed their data, they tended to be more engaged in their health care. The faster patients got their test results, UPenn discovered, the more likely they were to book follow-up appointments based on those results.

Co-presenter Leonard Berlin, M.D., a radiologist at Skokie (Ill.) Hospital and a professor of radiology at Rush University in Chicago, said some radiologists fear overstepping their bounds in conversations with patients and interjecting their opinions about diagnosis and treatment that should come from the primary care physician.

More communication might improve patient care by making radiologists more visible to patients, but some radiologists don't want to be seen.

Richard Taxin,
president, Southeast Radiology Ltd.

Radiologists will have to get over that particular fear, Berlin said, because the U.S. health care system's movement toward patient-centered care requires that radiologists learn new communications skills. They'll have to come out of their dark reading rooms and interact with patients. For most radiologists, that will require a sharper understanding of their boundaries: That is, they will have to figure out which topics they should address in sharing patient data, and which need to be referred back the primary doc.

In practice, sharing patient data had little negative effect

UPenn's experience with the pilot of personal health records (PHRs) was spurred by its preparation for a systemwide push for meaningful use compliance, Langlotz said. That included sharing diagnostic test results electronically within three days, according to stage 1 criteria. The facility marketed the patient portal aggressively, using television and radio ads, YouTube videos, and fliers in waiting rooms.

"Overall, it was a successful experience; we're glad we did it," Langlotz said of the pilot. There are still kinks to be worked out, such as how to communicate critical test results compassionately, especially when meaningful use might force them to be uploaded to the PHR at inconvenient times, such as late on a Friday. Compassionately dealing with inpatients -- some of whom are "not in a state to review their reports," as Langlotz put it -- is another difficult problem to tackle. But thanks to overwhelmingly positive patient response to the PHR pilot and the lack of problems -- including the ones that physicians indicated in a pre-pilot survey they feared would occur -- UPenn plans to roll out the PHR system to the rest of its hospitals.

Research on patient perceptions of data-sharing conducted by co-presenter Annette Johnson, M.D., associate professor of radiology at Wake Forest Baptist Medical Center in Winston-Salem, N.C., showed that patients want to see data, including radiology reports. In fact, most of the small study's cohort of 53 patients expressed anxiety about not having access to their data -- and their anxiety built as time elapsed between the test and release of the results.

Johnson was surprised that 75% of the patient respondents indicated that they would have felt either better or much better getting test data themselves through a Web portal instead of waiting for a call, regardless of the seriousness of the results. Older patients were more interested in the portal than Johnson expected. In fact, there were no differences among different age or gender groups.

One takeaway her team got from the results was that patients need to be in control of what information they see. "Any system that we come up with, we thought, has to allow patients to self-select their desired level of timing and access [to test results]," Johnson said. "Some people do not want to go online and see something like this; some people really do. They should be able to choose. That's what they want -- to choose."

Let us know what you think about the story; email Don Fluckinger, News Director, or contact @DonFluckinger on Twitter.

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