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This article is from the In-Depth Report Modernizing Medicine: Health Care in the Information Age

The Future of Your Medical Data

How health data is becoming better connected, a la Facebook, changing the way patients, doctors and institutions interact
electronic health medical record data future patient engagement



ISTOCKPHOTO/VISUALVIELD

Some 23 million additional U.S. residents are expected to become more regular users of the U.S. health care system in the next several years, thanks to the passage of health care reform. Digitizing medical data has been touted as one way to help the already burdened system manage the surge in patients. But putting people's health information in databases and online is going to do more than simply reduce redundancies. It is already shifting the very way we seek and receive health care.

"The social dynamics of care are changing," says John Gomez, vice president and chief technology strategy officer at Eclipsys, a medical information technology company. Most patients might not yet be willing to share their latest CT scan images over Facebook, he notes, but many parents post their babies' ultrasound images, and countless patients nowadays use social networking sites to share information about conditions, treatments and doctors.

With greater access to individualized health information—whether that is through a formal electronic medical record, a self-created personal health record or a quick instant-messaging session with a physician—the traditional roles of doctors and patients are undergoing a rapid transition.

"For as long as we've known, health care has been 'I go to the physician, and they tell me what to do, and I do it,'" says Nitu Kashyap, a physician and research fellow at the Yale Center for Medical Informatics. Soon more patients will be arriving at a hospital or doctor's office having reviewed their own record, latest test results and recommended articles about their health concerns. And even more individuals will be able to skip that visit altogether, instead sending a text message or e-mail to their care provider or consulting a personal health record or smart-phone application to answer their questions.

These changes will be bolstered by the nationwide shift to electronic medical records, which has already begun (helped along by $19 billion from the federal government's 2009 economic stimulus package). Although the majority of U.S. hospitals and doctors offices are still struggling to start the changeover, many patients already have electronic medical records—and some even have partial access to them. The MyChart program, in use at Cleveland Clinic, the University of Texas Southwestern Medical Center at Dallas and other facilities, is a Web portal through which patients can see basic medical information as well as some test results.

Other consumers are developing their own personal health records by building profiles on Web sites such as Google Health, which allows users to upload their medical history, medications and even their CT scans and MRIs as well as share them with authorized care providers and others.

Medical data is getting a new digital life, and it is jump-starting a "fundamental change in how care is provided," Gomez says.

Enlisting patients
Increased access to personal medical information is likely to be a welcome change for patients who want to be more involved with their health care. Further, doctors will be able to use the additional information to make better diagnostic and treatment decisions. But this "explosion of data," as Gomez describes it, could also be a curse for physicians and the health care industry in general.

Doctors might soon be in full possession of most of their patients' health information—from past lab test results to journals of self-reported symptoms—all in searchable form. But with that access comes "an expectation that you will be smarter about how you use that data to treat patients," Gomez says.

This newly available information could eventually lead to liability issues for doctors who fail to take it into account in treatment decisions. Expanded doctor–patient communication also raises liability and even reimbursement questions, Kashyap explains. If "you're having a side effect and I'm managing it by e-mail," she says, "it's not really clear" how liability and reimbursement will be classified for that advice.

The balance of doctor contact already seems to be shifting. As people expect more access to their doctors—via e-mail, texting and even social media—they might be content with less time face to face or even on the phone. But as in other professions, this digital communication can become a huge time burden. "Physician work flow—it's already almost at a crisis," says Annette Johnson, an associate professor at Wake Forest University Baptist Medical Center, who has studied patient and physician attitudes toward digital medical data. To address the communications demand, some researchers have suggested expanding the responsibilities of nurses and other clinicians, who could help guide patients through basic questions and explanations.

Another way to help reduce the swelling workload for doctors is to encourage participatory medicine, says Dave deBronkart, a former cancer patient and a now patient advocate. In such a partnership, patients would stop expecting doctors to "know everything and do everything," he says. Rather, they would be more actively involved in working with doctors as partners in their care by being more aware of their own health histories, conditions and risk factors.

And this increase in sharing and engaging in the health process—fostered by more and better data—has the potential to improve the doctor–patient relationship, rather than degrading it. "They can be an ally," Kashyap says of patients.

Other doctors, however, are concerned that some patients' desire to participate will bog down the physician's ability to pursue diagnostic and treatment hypotheses based on the latter's formal training and experience, Kashyap notes.

Downloading care
If fewer office consultations are scheduled and more information is shared with patients digitally, many researchers worry that patients will have trouble properly digesting that data. Although it might be efficient to have lab test results available for patient downloading as soon as they're available, "there has to be a way to provide meaningful interpretation" along with the data, Gomez says.

DeBronkart has already had the experience of reading—and misreading—his test results online. "I misinterpreted a CAT-scan report because I didn't know the vocabulary," he says. But that incident did not leave him wishing he had not downloaded the findings himself. "The answer is to inform, educate and empower" patients, rather than keeping them in the dark, says deBronkart, who writes a blog called The New Life of e-Patient Dave (e-patient is short for "engaged patient").

With experience comes learning, he points out. And as people gain more experience with their medical and health information, they will become more adept at understanding and using it, he notes.

From her research, Wake Forest's Johnson has found that patients would welcome rapid online access to new test results. "It's a growing movement among people," she says. "It's an information age, and health care has been left out of it for awhile." But the information should come with explanation—perhaps in the form of links to vetted informational Web sites, she notes.

In addition to context, Johnson says, "timing is crucial. We don't want to do anything that will cause patients to be more anxious." Although patient focus groups have noted waiting for test results as one of the most anxiety-provoking times, Johnson worries that it might be better than seeing a result "and you don't know what it means, and no one is available to discuss it."

Cultivating customers
When people do have to make a trip to the hospital or doctor's office, their digital data will help to prepare not only the patient, but also the care providers and institutions. As Gomez notes, many patients become frustrated by having to repeat key information to each new health professional that they meet. If such information were digitized and distributed among the relevant doctors, nurses and administrators, interactions with patients could be more geared toward furthering conversations about care rather than just catching up on background information.

Many researchers in the field of medical information technology note that digitizing patient data—and patients' increasing access to it—will likely shift hospital business models to be more like those for other service industries. "Patients will become clients or customers," Gomez says. As people can take their data and seek consultations or advice from institutions across the country or the globe, hospitals themselves will need to up their competitive strategies to obtain and retain patients. And much of that, Gomez says, will be in becoming more "information oriented," so that, for example, dozens of health professionals that may attend to a patient do not need to keep asking the same questions.

Gomez projects that many of these sweeping changes in patient access to health and medical information will unfold in the next three to five years. Technological developments, however, could even shorten that window.

Personal health data as an individually managed aspect of daily life, however, has not yet reached the popularity of other killer apps for personal and lifestyle services, such as mobile banking, stock trading or social networking. Yale's Kashyap points out that fewer than 10 percent of people who currently have a patient-controlled personal health record use it on a monthly basis, and that as a physician who provides these records with direct-messaging capabilities, she does not get that many messages from her patients. Kashyap's estimates for adoption are a little more conservative. After working with personal health records for several years, she predicts about a decade's time before many of these personal health record programs will fully take hold. But in the future, she says, personal health data will likely be integrated with genomic information to provide finely tuned individualized care. And the new wealth of digital data will be a boon to medical researchers who will be able to get a fuller picture of diseases and conditions over time and populations.

The payoffs for more personal digital health data are likely to be great—both in terms of improved health as well as the reduced costs that many researchers have posited (although most are quick to add that data on these outcomes is still yet to be seen). Giving individuals more access to their medical records could reduce the number of medical mistakes made each year. "There are just a vast number of errors in our medical records," deBronkart says. And with patients looking over their own information more frequently, mistakes and oversights are more likely to be caught before they cause harm.

More preventive health decisions made by individuals can also decrease medical care costs down the road. Kashyap explains that personal health records are useful for individuals to make "if-then" decisions to control symptoms or keep an eye on their medication's effectiveness. To help stem the tide of chronic conditions, such as obesity and diabetes, "we hope that we can change people's attitudes toward work, living [and] diet" through personal health records because "that's hard to do when you see the doctor so infrequently," Kashyap says.

"Once you provide information, you empower the patient," she says. Having individualized and portable health information also "can help with chronic disease management," she notes, reminding patients to take their medication or stay on top of symptoms to see when their drug regime or lifestyle should be changed.

Despite all of the cultural and technical challenges of expanding individualized digital health information, the proliferation of this data seems imminent. "I think it's ready for takeoff," Kashyap says.

Modernizing Medicine: Health Care in the Information Age

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