Getting Medical Advice on the Web from Other Patients

Nancy Shute

Patients swap personal stories, offer help, and share studies at "crowd-sourced" disease sites

"I think you might want to talk with a doctor about bipolar disorder," a stranger informed Angela Anderson a few months ago. She took it well. In fact, she welcomed the suggestion. Its source was another member of, an online site where people enter their symptoms and treatments for illnesses -- such as Anderson's depression -- and others can post comments.

The fellow member had "picked up that my mood was really hyper," says the 31-year-old Anderson, who lives in Mankato, Minn. She conferred with her doctor, who agreed with her unofficial adviser, and Anderson now is doing better on a different medication.

Using the Internet as a medical resource is hardly novel

More than 3 in 5 Americans say they have done so. Growing numbers, however, go online not just to do research but to share their medical stories with others -- and to contribute, like Anderson, to "crowd-sourced" sites where individuals can compare their symptoms and treatments with those of other members and of patients outside the group.

It's "like Netflix, but you can drill through to other renters" to see their favorites, find out what you have in common, and share opinions, says Jamie Heywood, cofounder of PatientsLikeMe.

This goes way beyond Google searches

PatientsLikeMe boasts that it's "a new system of medicine by patients for patients." Heywood cofounded the site in 2004 to try to save the life of his brother Stephen, who was diagnosed in his 20s with the progressively disabling illness ALS and died at age 37 when his ventilator accidentally disconnected. Frustrated by the lack of productive research, Heywood, a mechanical engineer, thought an online database of patients' reports on their diseases and their responses to treatment would speed the work and improve care. The plan is to enroll 1 million patients and harvest their data for researchers. "We're not a social site," says Heywood. "We're a medical network."

A similar disease-centered site, CureTogether, started up in July 2008 with "communities" for people with migraines, endometriosis (when the lining of the uterus grows outside the organ), and vulvodynia (ongoing vulva pain).

Its communities now cover 186 health conditions and include user-created databases.

Diabetic Connect has over 35,000 registered users who share advice on managing their condition and rate the usefulness of others' posts.

All of this collaborative swapping of helpful wisdom at zero cost may sound great, but as with so much on the Internet, completeness, accuracy, relevance, and timeliness should always be questioned.

"If you believe that the wisdom of crowds always works out in practice, how do you explain Congress?" says Michael Millenson, a health quality consultant and author of Demanding Medical Excellence: Doctors and Accountability in the Information Age. "Patients can have flaws in their perceptions and beliefs, the same way that physicians do."

Still, "I find it valuable to go out and get all those points of view," says Trisha Torrey, a 57-year-old former marketing consultant from Baldwinsville, N.Y.

"But once you get them, you have to come back and get them confirmed in a credible place."

Diagnosed with lymphoma in 2004, she suspected after weeks of research, some of it online, that she didn't have cancer at all -- a suspicion confirmed by a pathologist at the National Cancer Institute who examined her slides at her doctor's request. Torrey, who writes the Every Patient's Advocate blog, favors "heavy-duty medical sites" like the National Institutes of Health's Medline Plus and the National Library of Medicine for reality checks.

Advocates say that what they learn from informed peers often is more helpful than what they get from their doctors, whose time to read the latest studies, let alone discuss them, is limited

"Patients can help," says Dave deBronkart, a 59-year-old software marketer in Nashua, N.H., who was diagnosed with metastatic kidney cancer in January 2007 and was informed that the median survival was 24 weeks. He says cancer patients, survivors, and their families in online groups of the nonprofit Association of Cancer Online Resources helped keep him alive. They assured him that he had found the right specialist and helped him decipher complex information he had found on medical websites. "When you're desperate," deBronkart says, "you don't need education as much as you need help with the big questions: What does this all mean? What should I do?" The treatments he chose made it possible for him to walk his daughter down the aisle this past May. As "E-patient Dave," deBronkart has testified in Washington as a champion of participatory medicine.

A tenet of crowd-sourced medicine is the hope of a finding that carries benefits far beyond participants in any one or two groups. Patients in one ACOR group share the credit for a genetic test and better treatment for a gastrointestinal stromal tumor that is often misdiagnosed as a leiomyosarcoma, another unusual cancer.

Despite getting state-of-the-art treatment, some people in ACOR's leiomyosarcoma group died. Others, who were in a trial for a new drug, survived. The husband of a survivor tracked down others who lived. Doctors eventually realized that they had stayed alive because they had GIST, not a leiomyosarcoma, and the new drug -- Gleevec -- works far better on GIST. A genetic test can now distinguish between the two.

With promise comes peril

Checks and balances on the use of the deluge of personal health information are few.

Many sites are sponsored by for-profit companies that could sell patient data. Some, including CureTogether and PatientsLikeMe, are upfront about selling anonymized data to researchers.

Other sites are less open. And sites that don't currently mine patient data could change their minds, perhaps marketing identifying information, too.

Beyond unwitting contributions to a site's bottom line and loss of privacy, patrons of the sites face possible identity theft or exposure of damaging details of their lives to employers, insurers, or the government.

"There's a risk with that," says Anderson. She doesn't use her surname in online groups, but she sees real names, hometowns, children's names, and divorce details posted by others. "People write about their feelings and then chat, chat, chat, it's out there."

She feels the benefits she gains from online patient communities outweigh any privacy risks.

Online communities are evolving too rapidly to tell whether Jamie Heywood's vision of sharing and comparing will advance care, or useless or dangerous information will propagate further and faster. Or, more likely, some of both.

© U.S. News & World Report







Getting Medical Advice on the Web from Other Patients