It’s Time to Turn to Research’s Most Valuable, Yet Underutilized Resource: Patients:
By Margaret Anderson, COO, FasterCures
A piece in yesterday’s New York Times, Research Trove: Patients’ Online Data, recounts the story of a young woman stricken by a rare pulmonary disease, and her attempts to raise money and connect a network of scientists to research her ailment. In collaboration with a Harvard cancer researcher, she launched a Web site for others facing her same diagnosis, on which patients could share symptoms and report health information.
Much of our medical system uses a top-down approach, where the doctor, informed by his colleagues, current research or, most likely, pharmaceutical representatives, tells the patient what to do or what drugs to take.
But, with the access to the internet, more and more patients are telling their doctors about their ailments. They are taking a more active role in their therapies. online tools now make it even easier.
Patients can now organize around diseases, raise money and work for therapies in ways that could actually change the entire paradigm of medical research. What happens when medicine becomes patient-driven, where the responsibility shifts?
It could be very problematic, since many people really do not want to be active. they want the doctor to tell them what to do in order to become well. Many doctors are effectively trained to respond in this way. But some people are seeking a different approach. It will be interesting to see if social media approaches can alter the current paradigm and to what extent.