Research Trove: Patients' Online Data

Since the Internet's earliest days, patients have used the Web to share experiences and learn about diseases and treatments. But now advocates say that online communities have the potential to transform medical research — especially into rare diseases that lack the number of patients needed for large-scale studies and rarely attract research financing from the drug industry. Also, it empowers patients to contribute, ask questions and help lead the way to discoveries. Scientists and entrepreneurs are increasingly exploring ways to tap that potential, and not just for rare diseases. Several private companies are now collecting patient data and genetic information online to use in recruiting patients for clinical trials, conducting research internally or to sell to drug and biotechnology companies. 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.