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including multiple sclerosis, Parkinson’s disease, depression, and post-traumatic stress disorder. I spoke with the husband of a woman who, months before, had been diagnosed with MS. He said the site has been invaluable, providing information, experience, and support. The 7,000 MS patients in the group—growing by more than 700 a month—categorize themselves by symptom and treatment and submit narratives and quantitative data: We can see that 395 patients took a particular drug for fatigue; 23 stopped taking it because the side effects were too severe, 21 because it didn’t seem to work, and 14 because it was too expensive. This experiential data is a goldmine to a patient trying to learn about and take greater control of her treatment. It is also valuable to the medical industry. The company explains that its operating costs are covered by “partnerships with health-care providers that use anonymized data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care.” When we share information in a network, all its members may benefit.

To build these networks, we need to think of health as a public story and rethink certain inhibitions to publicness. We are not motivated to be open when insurers or employers can reject us due to preexisting conditions. Not that I want to push a political agenda, but universal health care would solve much of that problem. Even then, I’m not suggesting that everyone reveal all their ailments. I understand if you don’t want to talk about yours. But there could be benefits if you do. Health is just one illustration of how the internet’s ethic of publicness could have a subtle but profound impact on how we live.

In 2008, Google started a health service online (at google.com/health) where users can enter their conditions and the drugs they take as well as results of tests, such as cholesterol screening, which they may download from a limited number of health companies that have signed up so far. Patients’ information is not meant to be public, though a few of us online folks have wished that we could publish our own pages openly so we could reap the benefits of medical networks. Google’s purpose is to give users more information (it feeds me news stories about afib) and to put users in control of their own information, because they have too little control now.

There is a movement afoot to standardize personal health records. It is related to another movement to create systems where customers control relationships with vendors—called vendor relationship management (VRM), the mirror image of customer relationship management (CRM). VRM is being spearheaded by pioneering blogger Doc Searls, a fellow at Harvard’s Berkman Center for Internet and Society. I view what he’s doing, shifting control to customers, as Jarvis’ First Law brought to life. Searls, who’s not an M.D., turned his VRM attention to health after spending a tortuous week in the hospital with pancreatitis, which he chronicled from his bed on Twitter and then on a blog. He complained about the lack of information he had, which led him and his doctors to ill-informed decisions that exacerbated his condition. “I believe the closed and proprietary nature of health care is itself a disease that needs to be cured,” Searls said as he linked to another blogger, Fred Trotter, who illustrated the problem of getting control of our own health information. “Let’s imagine that I had some kind of life event that would require me to gather those records together,” Trotter blogged. “To do that, I would need to call every doctor I have ever visited, and request a copy of my records.” Those doctors would all want to fax him records. “Faxing over phone lines is the ‘health exchange network’ that we have in the United States,” Trotter said. He would end up with a giant pile of documents that is not searchable, is hugely redundant, and is not easily read. His doctor is unlikely to spend the time needed to sift through it all looking for that nugget of a clue.

Searls argues for open standards in medical