I do believe there is a place for online patient research in our health care system, despite my privacy phobia. I understand the concern of relying on patient-reported data, since we as a species love to present our “best selves” instead of the real ones, but I think the benefit to the group of afflicted is a great one.
These communities could also aim education programs at their members, training them to be better researchers of themselves, to thus, encourage the creation and collection of the cleanest data possible. Let us not forget that gentlemen scribbling down observations in notebooks about their immediate world was the method of many hallowed Great Scientists. You can find the full article I referenced below here.
Amy Farber quit law school and founded the LAM Treatment Alliance to raise money and connect a network of scientists around the world to research this mysterious disease, which destroys young women’s lungs, after she learned she had the rare and fatal disease.
To her dismay, she says, she encountered a cumbersome research system fraught with obstacles to collaboration and progress — one that failed to focus on patient needs.
She took her frustrations to Dr. George Demetri, a member of her organization’s advisory board (and a professor and cancer researcher at Harvard Medical School) and Frank Moss, director of the Massachusetts Institute of Technology Media Laboratory.
The output of the collaboration between her group and the Media Lab: LAMsight, a Web site that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.
Advocates like Dr. Farber say that online communities have the potential to transform medical research — especially into rare diseases like hers that lack the number of patients needed for large-scale studies and rarely attract research financing from the drug industry. Also, she said, it empowers patients to contribute, ask questions and help lead the way to discoveries.
“Patients have been a tremendously underutilized resource,” she said.
Supporters of this model — sometimes called crowd-sourcing or open-source research — call it democratization of research and say they are pioneering new models that put patients in control of their data and build bridges between researchers, patients and their doctors. They say these methods are far cheaper and faster than traditional research, which has high start-up costs and relies heavily on clinicians.
Still, some experts are skeptical. Questions abound about how these sites will guarantee patient privacy; whether patients fully understand what it means to share their medical information online; whether private businesses should have to follow the same strict patient protection rules that govern most researchers; and the quality problems of user-generated data.
In June, the Belgian pharmaceutical company UCB announced a partnership to build an online epilepsy community with PatientsLikeMe, among the first private companies to develop a platform for data sharing by patients. PatientsLikeMe, based in Cambridge, has as members tens of thousands of patients who contribute detailed information about their diseases, drugs, doses and side effects.
Genetic companies have also taken up patient-driven research. The Silicon Valley company 23andMe, for example, started a program this summer called “Research Revolution.” People can buy a stripped-down version of 23andMe’s genetic service, which gives people DNA information on ancestry and risk for certain diseases, for $99 and then contribute their genetic data toward research into the disease of their choice.
The company plans to store the genetic profiles of thousands of people to use for research internally and in partnerships with other companies. “We call it research 2.0,” said Linda Avey, a founder of 23andMe. “It’s the Wikipedia approach versus Encyclopaedia Britannica approach.”
Private companies like 23andMe and PatientsLikeMe are not bound by the same patient protection rules that govern traditional medical researchers who receive federal financing. Company leaders say they have detailed patient privacy statements and ethics policies.
Born Curious 
Recent Comments