Inside 1to1:Privacy

Health Information-Sharing Environment

September 1, 2009

By Larry Dobrow

After enduring migraine headaches for 20 years, Michael Cowden was at the end of his rope. While he'd received treatment advice from tens of physicians, he was no closer to mitigating the debilitating effects of his headaches than he was years earlier. So he decided to get, in his own words, "migraine-aggressive."

Web research yielded a wealth of information, much of it culled from blogs written by fellow migraineurs. Before long, he'd turned his treatment regimen on its ear. "When dealing with healthcare providers, I was educating them about my disease, rather than vice-versa," Cowden says. "The community of migraineurs was providing more information about remedies or treatments I could try--dietary things, environmental things--than my doctors were, even the neurologists."

Hoping to compile all this information in a single place, Cowden built and launched MigraineLiving.com, which serves as both a personal online treatment diary and an online community center of sorts for migraine sufferers. While it may lack the foot traffic of TMZ.com--still in beta version, the site boasts only a few hundred regular visitors and contributors--MigraineLiving.com is one of hundreds of Internet entities that could well change the way everyone from patients to physicians and researchers think about healthcare. And the privacy-be-damned sharing of personal health information and anecdotes is at the core of it.

As more and more individuals with chronic conditions seek out advice and a sympathetic ear online, entities researching balms and remedies have started to regard them as perhaps the healthcare food chain's most underused resource. Patients' stories and experiences about living with illness had largely gone unlogged during the days before the Internet. Now, researchers and the drug industry are taking note, hoping that by aggregating the glut of information they might uncover potential new avenues for research.

To Esther Dyson, who sits on the board of consumer genetics site 23andMe.com and counts herself as an investor in PatientsLikeMe.com, which facilitates data sharing by patients, the only question is why it took so long for physicians and researchers to start tapping this information lode. While she acknowledges potential drawbacks, Dyson believes the pluses far outweigh the minuses.

"For research purposes, you want lots of people contributing, to smooth errors and get a good sample," she explains. "Those early adopters and the intensely interested are often a good canary in the coal mine, detecting things before they become broadly visible. It's like a focus group: You don't use it to sample the population, but rather to get insight."

The benefits of all the information sharing could be huge, especially for sufferers of diseases that plague a smaller number of people (and thus tend not to attract huge time and dollar investments from researchers). The emotional and participatory aspects of it shouldn't be overlooked, either: sympathetic ears are often hard to come by in the offline world, plus the empowerment that comes with finding like-minded individuals could prompt patients to be more proactive in their own treatment.

At the same time, privacy concerns haven't been addressed in even a peripheral manner. For the most part, those with some stake in the matter believe that individuals can decide on their own just how much information they feel comfortable sharing--and that's what worries privacy pundits.

They wonder if sites guaranteeing the sanctity of personal health information are capable of doing so (or truly willing to do so), as well as whether the patient-protection rules to which federally funded researchers are bound should be extended to private businesses in the field. Pfizer, for instance, recently announced plans to launch a site that links patients with pharma firms, doctors, and researchers. The site is designed to help the latter groups find willing subjects for clinical trials based on the personal information, anecdotal or otherwise, submitted by patients.

For now, to share or not to share is a matter of individual choice. "I've worked with some of the most ardent privacy activists in the world, who would not ever share anything that's not completely anonymous. And I've worked with Millennials, who don't seem to mind putting it all out there from the beginning," shrugs Sarah Granger, a new-media consultant who has written about related issues for Ethics in the Computer Age and Security Focus. "I advise people to err on the side of caution, to share what they're comfortable with." Granger knows of what she speaks: She has shared and documented online her experiences dealing with pudendal neuralgia, in which stretched nerves from pregnancy and delivery result in chronic pain.

Dyson, on the other hand, questions if some of the privacy concerns have been overstated. "People need to understand what's happening to their data and then make informed choices," she says. "But most health information just isn't that interesting to other people... it's not up to me to tell people what they consider to be sensitive; that's their choice. Personally, I would like to make disclosure statements in the form of a quiz, so as to be sure people really know what they are signing up for."

Other problems remain, of course, even outside the privacy arena. For one, the information samples aren't random; they come from individuals who took the trouble to come forward on their own. Too, "quicker and less costly" obviously isn't sufficient justification to abandon the usual clinical rigor.

Nonetheless, if all parties involved get past these and the accompanying privacy issues, it would seem that sharing and pooling information in online communities like Cowden's migraine site could eventually help usher in an era of smarter, more reactive disease prediction and prevention.

Dyson believes the technological climate is ripe for just such a revolution. "People encourage one another," she says. "It's not just data they're sharing; it's knowledge about one another's problems and states of mind. It's empathy."