Research Trove - Patients’ Online Data - NYTimes.com
Since the Internet’s earliest days, patients have used the Web to share experiences and learn about diseases and treatments. But now 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.
Mr. Moss, who came to the laboratory in 2005 from the drug industry, agrees. Patients’ everyday experiences in living with an illness are an enormous source of untapped data, he said; aggregated, those data could 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 said.
Scientists and entrepreneurs are increasingly exploring ways to tap that potential, and not just for rare diseases.