Turning patients into scientists: Open source research like the LAM Treatment Alliance

After Amy Farber learned she had the rare and fatal disease called LAM (“lymphangioleiomyomatosis”) in 2005, she became determined to increase and speed up research into her illness, with the hope of finding a cure in her lifetime.

Now 39, she was a law student with a doctorate in anthropology, about to start a family. She 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.

With the help of Frank Moss’ Media Lab at the Massachusetts Institute of Technology (MIT), she created LAMsight, a Website that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.

Amy Farber says this will empower patients to contribute, ask questions, and help lead the way to discoveries. Frank Moss agrees, adding that patients’ everyday experiences in living with the disease can generate new hypotheses and avenues for research. “We’re really turning patients into scientists and changing the balance of power between clinicians and scientists and patients,” he says. Supporters of this model call it “crowd sourcing” or “open source research,” and praise its democratization of research.

She hopes her website will become the largest database of active LAM patients. More than 100 registered users on five continents are already using it.

Advice to patients with rare diseases: Search the Web to see if a similar website is speeding research into your disease.

Read another story about PatientsLikeMe, a similar website for other rare diseases.

Thanks to Sarah Arnquist for the source article in the New York Times of August 26.