Medicine 3.0 Panelists Dissect Patient-Generated Data

Ken Terry

March 25, 2016

The second event in Medscape's Medicine 3.0 series, held March 24 at the Scripps Research Institute in La Jolla, California, was a wide-ranging, lively panel discussion on how patient-generated data is impacting healthcare and may affect it in the future.

The series is billed as "conversations with physicians about ideas that can change medicine."

Eric Topol, MD, editor-in-chief of Medscape and director of the Scripps Translational Science Institute, set the tone for the panel by declaring at the outset, "Most of the things being done by doctors today will someday be done by patients."

Dr Topol noted that the template for this revolution has already been laid. Millions of patients with diabetes already monitor their own glucose levels. National labs like LabCorp and Quest now take orders for lab tests from patients and send them the results directly. And, in the 8 years since the iPhone appeared, mobile health apps have proliferated and are being widely used. Stethoscope and otoscope apps are available, and lab tests on a chip are not far away.

Dr Topol (Kristy Walker/Medscape)

Joseph Wang, DSc, chair of the department of nanoengineering at the University of California, San Diego (USCD), and director of USCD's center for wearable sensors, said that new types of noninvasive, continuous monitoring sensors are being developed. For example, he said, there's a new method to monitor glucose levels that uses saliva in place of the widely used finger-stick tests. Moreover, it will soon be possible to measure electrolyte levels by analyzing sweat, he added.

Paul Teirstein, MD, chief of cardiology and director of interventional cardiology at Scripps Clinic and director of the Prebys Cardiovascular Institute, said he has asked some of his patients to use the AliveCor mobile heart monitor. This system sends him their EKG results, and the patients can check their own EKGs on their mobile devices.

The AliveCor approach, like the direct ordering of lab tests, is threatening to some physicians, Dr Topol noted, but it's also a way "to avoid unnecessary aspects of care for patients who want to be autonomous."

Virtual Medical Assistant

Most of the attendees who participated in an instant text poll agreed that patient-generated data should be integrated in an electronic health record (EHR) if it were validated.

Besides making sure that monitoring devices are generating reliable data, physicians must make sure that it is actually coming from a particular patient, said panelist Cheryl Pegus, MD, MPH, director of the division of general internal medicine and clinical innovation at NYU Langone Medical Center and clinical professor of medicine and population health at NYU School of Medicine in New York. "We need to be very cautious that the data provenance is accurate," she stressed.

Drs Teirstein, Wang, Pegus, and Topol (Kristy Walker/Medscape)

Dr Topol pointed out that the sheer volume of monitoring data could easily overwhelm EHRs and information technology departments. He suggested that perhaps patient-generated data should be stored in a patient-controlled record that could be shared with providers.

For monitoring data to be useful to patients, Dr Pegus said, they must understand how to interpret it and apply it to their own care. This is a tall order, considering that an estimated 90 million Americans have poor health literacy and that health information is so complex, she noted.

Dr Pegus suggested that the monitoring data might be sent to private companies that could use algorithms to analyze it and add context by having a two-way connection with EHRs. Then these firms could feed back clear, comprehensible information to patients, along with recommendations on how to apply it to their healthcare.

Dr Topol took up this thread, hypothesizing that someday there might be a "virtual medical assistant," analogous to the iPhone's Siri, that could perform this task.

An "avatar" such as the one Dr Topol envisioned could help patients with simple stuff, Dr Pegus said. "But when the analysis gets to a certain point in the algorithm, humans must be involved."

Later, a nonphysician member of the audience asked, "Why don't we just upload our data and do our own analyses with the help of algorithms?" The questioner suggested that perhaps the paternalism of physicians was to blame.

Dr Teirstein admitted that some doctors are paternalistic and said that needs to change. However, he stated, "There will still be a need for doctors to interpret the data and to guide patients when they have horrible diagnoses."

Dr Topol noted that there are already "citizen doctors" who do much of their own diagnoses, and Dr Pegus said, "I think that will happen and be accepted." But she estimated that only about 25% of patients would be interested and able to do this.

Doctor-Patient Relationship

The panelists also discussed how all of this might affect the doctor-patient relationship. Dr Pegus noted that many patients already have a fair amount of input through patient portals, which she sees as empowering them to ask questions they might not otherwise ask. "For a lot of patients, this has reinforced their relationship with their doctor," she said. It also helps them better understand what their doctor told them during their last office visit.

Other trends, however, are driving a wedge between physicians and patients, the panelists said. Dr Topol noted that the average length of a primary care visit is under 10 minutes, and patients may have to wait a few weeks for an appointment. Not surprisingly, he said, self-care is "zooming" and many patients are going to alternative medicine practitioners. The rapid increase of video visits to on-demand doctors is another indication that consumers have more choices than they used to, added Dr Pegus. "The smorgasbord of how you receive your healthcare is growing."

One physician in the audience said he was dismayed that technology is taking precedence over the "empathy" that doctors show for their patients. Dr Teirstein disputed the idea that technology destroys empathy. "Data can help, but there are areas where doctors need to be involved, and patients want that," he said.

Dr Topol gave an example of how technology can draw patients and physicians together, rather than driving them apart. He said he was recently performing cardiac ultrasounds on patients with a portable ultrasound unit in his clinic. He invited the patients to look at the images and explained what they meant. Patients were more engaged, he noted, than they would have been if he had sent them to an outside lab or an imaging center.

Patient autonomy is a matter of a "copiloting" care with doctors, he concluded. "If you're sick, you need that empathy from the doctor." But technology need not get in the way.

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