E-Patients: "E" Is for Empowered and Engaged in Their Own Care

As even the busiest clinician knows, patients are using the Internet for medical information. They come for their visits preloaded with information (often of dubious value). Every month, some 91 million Americans look at 1700 health-related websites, market researcher John Mangano of ComScore, Inc. told an FDA hearing last week.

Not only do they study up before seeing the doctor; they go back afterwards to learn more about their prescriptions. And they may join an online support group as well.

What fewer physicians realize (often being far too busy to visit Twitter or Facebook) is how actively some patient groups are using the Internet to try to navigate healthcare reform in their direction, and indeed to gain personal control of their own medical care and the information about it.

“How do I teach my doctor to be in collaboration with me? I am the consumer, after all,” said Liz Dreyer, who works for Learning Worlds Institute, a consulting firm started by artisits, that is interested in healthcare reform. The so-called "e-patient" movement is growing as Baby Boomers age, Dreyer added, fed by its "grassroots mentality."

Dreyer hosted one of the impromptu sessions at last week's HealthCamp New York City, where the topic was redefining "medical home" not as an effort managed by doctors but as the place where the patient coordinates her own care and that of her family. This was the latest of 18 similar HealthCamps held since June 2008 in various cities around the US and the world. (The last one was in San Francisco and the next will be in Boston.) They're think tanks open to all comers, at which entrepreneurs, healthcare technologists, and activists-and one or two health care providers-meet to brainstorm about paradigm shifts in the medical system.

HealthCamps arose out of the “passion people have about taking health care into their own hands,” according to their founder, Mark Scrimshire, who is web director for CareFirst Blue Cross-Blue Shield of Maryland. It's not all just talk, he added; some of the ideas turn into actual software and real companies.

For example, consider the exchange between a doctor and a web designer at a session on health screening during HealthCampNYC.

Why should busy primary care physicians be responsible for initiating screening tests? That question came from Jason Bhan, who practices family medicine in northern Virginia but also oversees the online physician-only community Ozmosis. As a provider, he said he finds it "archaic" that patients have to visit him both pre- and post-screening. Wouldn't it make more sense to see the patient only if the test result is positive? Why is it his responsibility to assure that screening is done in the first place? Whose responsibility should it be-the government? Insurers? The people at risk?

As the conversation evolved, listeners came up with a scenario to match his inquiry: Wouldn't it be more efficient to have a mobile "app" that signals those patients who need a screening test, along with online counseling as to the reason, leaving it to the patient to follow through? There are some details to work out, of course: financial incentives, follow-up, the matter of an electronic health record.

"Totally! Book it online! I love that!" called out Seanita Tolliver. "The information stays in my data repository. That could be great. We're talking on the same page." (Tolliver is a graduate student in New York University's Interactive Technology Program, and she was motivated enough to spend a Saturday at the session. If she loves the idea enough, it could conceivably become an app.)

 Absent from the conference, because he lives in New Hampshire, was the one person most closely identified with the e-patient movement today: Dave deBronkart, whose Twitter "handle" is ePatientDave.  When he found he had metastatic kidney cancer, deBronkart used the Internet aggressively to address the challenge, becoming closely involved with patient support groups and amassing other online resources. Eventually he became one of the founders of the Society for Participatory Medicine.

The society's web address is http://e-patients.net, and the second line on its home page reads "because health professionals can't do it alone." This month the society launched the Journal of Participatory Medicine, with a stated goal of stimulating medical research in which patients are prime movers, not mere "subjects."

The "e" in e-patient doesn't stand for "electronic," deBronkart said in a recent interview posted by blogger Phil Baumann, who works as a registered nurse in Pennsylvania. "Today the first E’s are being empowered and engaged in your care," deBronkart said. "In a way the Internet is almost incidental: people use the Internet for everything, even ordering pizzas, so we naturally use it as patients too."

 Besides pizzas, patients in New York City can now reserve medical appointments online via ZocDoc, which books about 90,000 office visits a month, and often does so outside office hours. A patient survey has shown that 40% of appointments are booked for a time within the next 24 hours, and 18% allow people to avoid going to the emergency room.

The e-patient movement also uses the Internet to achieve much larger goals. A few days before HealthCampNYC, results were presented at the conference of the Connective Tissue Oncology Society from a study of leiomyosarcoma that had been initated by online patient groups that are part of the Association of Cancer Online Resources (ACOR). The Internet-based support groups collaborated to create a centralized tissue bank for research into the rare malignancy, said ACOR's founder Gilles Frydman. Within 18 months, they had collected 400 samples used in "research that would not have happened otherwise."

Frydman, who founded ACOR after his wife was diagnosed with breast cancer in 1995, predicts that e-patient initiatives of this kind will create a "massive growth of medical information" of a different kind, informed as much by the priorities of patients as by the interests of the researchers.

Physicians and entrepreneurs alike may see many hurdles in achieving the ambitious goals of the e-patient movement. But Jacob Kriegel, a first-year medical student at Columbia University who dropped by for the Saturday session, said that his classmates would find nothing startling about the concepts behind HealthCamp.

"Patient involvement is definitely in the curriculum," he said-to the obvious surprise of some other participants. "They definitely recognize that the patient is an important part of the team."