e-Patient Networks on the Rise

In this era of government gridlock and the 15-minute doctor’s appointment, a growing number of consumers are no longer waiting for the political establishment to solve the nation’s health care crisis. Instead, they are banding together to fix problems themselves.

Using the latest technology and a lot of moxie, all sorts of innovative organizations have popped up, delivering the same essential message: patients who actively participate in their own care can improve their health – and help others, too.

People can now join online groups for almost every disease imaginable, analyze health statistics from thousands of patients dealing with the same medical condition, and even get decision-making tools based on the latest scientific evidence to help them choose what treatments to pursue.

There are groups that cater to small segments of the population, such as the “I’m Too Young for this Cancer! Foundation,” which runs stupidcancer.org for people between the ages of 15 and 40. And there are massive websites, like Inspire, with about 200,000 members, which partners with dozens of nonprofit advocacy groups to offer online support for people coping with different diseases.

“Patient empowerment is approaching its tipping point,” writes Trisha Torrey, who hosts About.Com’s patient empowerment guide. Movement leaders call 2011: “The Year of Patients Rising.”

There is even a patient empowerment organization now, led mainly by doctors and professors, which espouses the movement’s philosophy. The Society of Participatory Medicine, launched in 2009, has a white paper, scholarly journal, and an active blog, titled: “e-patient.net: because health professionals can’t do it alone.”

In the white paper, called “e-patients: how they can help us heal health care,” a Harvard Medical School professor describes the group’s vision. When patients “participate more actively in the process of medical care, we can create a new health care system with higher quality services, better outcomes, lower costs, fewer medical mistakes, and happier, healthier patients, ” says Dr. Charles Safran, chief of Harvard Medical School’s clinical computing division. “We must make this the new gold standard of health care quality and the ultimate goal of all our improvement efforts.”

Dave deBronkart, one of the Society’s founders, is certainly a happier, healthier patient because of the movement. In fact, an online patient community may have saved his life.

deBronkart, who calls himself “e-patient Dave,” joined a patient group shortly after he was diagnosed with late-stage kidney cancer – and given only 24 weeks to live. Patients told him about high dosage interleukin, saying that even though it only works occasionally, most hospitals would not mention it existed, let alone suggest patients try it. The drug worked, and four years later “you can’t find a website that gives patients this information,” e-patient Dave said in a recent speech, which is now ricocheting around the Internet. “It’s the power of patient networks.”

Patient networks may also become a potent source for research. This April, a prominent medical journal published the first study ever based on a patient network – an observational study of participants from PatientsLikeMe, a health data-sharing website. The article, published in Nature Biotechnology, showed that the drug lithium carbonate did not slow the progression of ALS, a neurodegenerative disease, as found in a small research project three years earlier. Nearly 600 people in the site’s ALS group participated in the study.

“The greatest untapped resource in health care is the consumer,” Vern Wilson, a former assistant Cabinet secretary, declared in 1970. His words have been quoted over and over during the past 40 years, as medical experts devise innovative ways to help patients help themselves – and harness the lessons of their experiences.

Such medical efforts are a sea change from the 1800s, when the American Medical Association declared in its original ethics code that “obedience of a patient to the prescriptions of his physician should be prompt and implicit.” Not until the 1940s did the first inklings of a patient empowerment movement begin to emerge, Michael Millenson, a health care consultant and author, says in the Journal of Participatory Medicine.

Dr. Spock led the way, giving mothers what seemed like revolutionary advice at the time: follow your instincts and feed your babies when they seem hungry. Thirty years later, feminists advanced the fledgling movement yet again, bringing “the sensibilities of the Civil Rights movement to the entire doctor-patient relationship,” Millenson says.

The movement was also bolstered by landmark medical research in the 1970s, which showed that doctors based treatment recommendations more on personal preference than on medical evidence.

Fast forward to 2010, when 58 people from 18 countries signed a statement in Salzburg, Austria, declaring that doctors have “an ethical imperative to share important decisions with patients” and patients have “a right to be equal participants in their care.” The Salzburg Global Seminar was organized by the Foundation for Informed Medical Decision Making, a nonprofit group aimed at helping patients make better health care decisions.

“While some patients participate in online groups and seek out as much information as possible, there are far more people who are woefully ignorant,” says Michael Barry, the foundation’s president. In a study of patients deciding whether to take statins for high cholesterol, the foundation found that only 17 percent knew the common side effects of statins and only 57 percent were aware of what a normal cholesterol level was.

Now, the foundation creates videos, articles, and online decision-making tools. These tools describe how different diseases can be treated, explain risks and benefits of various treatments, and also help teach people how to make a decision.

For informed patients who want to take advantage of the most cutting-edge sites on the Web, there are plenty of options. PatientsLikeMe, founded by three MIT engineers, encourages patients to not only find others dealing with the same medical problem, but to actually share their medical data with the group. This allows someone with migraines, for instance, to find out how others treat their headaches and see how many people had side effects from certain drugs.

Patients can track their symptoms over time and also create doctor visit charts, allowing them to print out detailed medical histories to share with physicians. The information is also available to medical researchers, who can use it to learn how diseases act in the real world and perhaps develop more effective treatments. The goal: to crowdsource a cure.

“The website gives patients information about their conditions that they can’t find anywhere else,” says Ben Heywood, the company president. While doctors focus on solving a specific medical problem, “disease isn’t just about pathology,” he says. “It’s also about what you have to do to live with it and maximize human fulfillment.”

“Patients can discuss with one another the best way to tell a child that someone has cancer or the easiest way to travel with a wheelchair,” says Brian Loew, CEO of Inspire, the company that runs patient forums for nonprofit advocacy groups.

“With PatientsLikeMe,” Heywood says, “people can understand their disease in a larger context. Many find it reassuring to learn that certain symptoms or side effects are normal for someone with their condition.”

The data can also help patients a key question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”

After using the site, 41 percent of HIV patients reported decreasing risky behaviors, while 22 percent of patients with mood disorders said they needed less inpatient care. Twelve percent of members switched doctors, the company said, while other patients discovered that their doctors had made mistakes.

“One patient learned from the website that she probably was suffering from bipolar disorder, rather than what her doctor had diagnosed as depression,” Heywood says. A multiple sclerosis patient, meanwhile, learned from the site that she was taking too low a dose of a drug. “After discussing the situation with her doctor, she received a higher dose, which resulted in two more hours of productive walking a day,” Heywood says.

For many, the rewards may be more basic, like simply discovering that they are not alone.

When one woman was laid off, her online friends got together and bought Christmas presents for her daughter. When another woman was hospitalized, a fellow patient visited her often, reading her the group’s online posts.

“There’s a real outpouring of affection from strangers,” says Beth McNaughton, Inspire’s vice president of community. “You see a lot of the good in people.”

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Contributing Writer Rochelle Sharpe is a Pulizter Prize-winning journalist with more than 25 years of health writing experience. Sharpe’s bi-monthly news feature for the Health Policy Forum focuses on issues related to health, wellness, and prevention. As a leading nonprofit health care research and consulting institute dedicated to improving human health, Altarum encourages open discussion and debate about the many challenges in health care today. All postings to the Health Policy Forum (whether from employees or those outside the Institute) represent the views of the individual authors and/or organizations and do not necessarily represent the position, interests, strategy, or opinions of Altarum Institute. Altarum is a nonprofit, nonpartisan organization. No posting should be considered an endorsement by Altarum of individual candidates, political parties, opinions, or policy positions. Read more.