patients are becoming active participants and contributors to research
Patients, researchers, and pharmaceutical companies are natural allies. They all want the same thing – to find a cure. In the meantime, they want to reduce symptoms and challenges associated with the disease to give patients a full life.
In the past, research on these two fronts has been the province of scientists, with patients anxiously looking on, raising political and social awareness for their disorder in hopes of generating funding, or raising the funds themselves. But now, patients are becoming active participants and contributors to research - not by doing the work themselves, but by contributing collective data.
Patients were early and enthusiastic participants in online discussions of how to live with their disorders, sharing everything from coping tips to symptom management advice on message boards, Facebook, Yahoo Groups, and foundation sites. Now scientists are realizing how much they can learn by tapping into the collective wisdom of patients. After all, who knows a disease more intimately than the patient?
The experience of living with a disease is itself raw data for scientists. When a disease has a genetic contribution, patients can also provide insight into family patterns. Online communities have the potential to be a resource for this data. This can be especially valuable in rare disorder communities because researchers may have a harder time locating patients to study.
A story in the New York Times tells about Amy Farber, who was diagnosed with LAM, a rare disease that destroys young women’s lungs. Farber took the role of patients with this disease to the next level, founding the LAM Treatment Alliance to raise money and connect a network of scientists around the world to research this mysterious disease. One of the organization’s initiatives is creating a website that takes patient reports and turns them into data that can be tapped for information about the disease.
There are issues to consider with this sort of data capture, of course, such as patient privacy, and the quality of patient-reported data. But crowd sourcing may turn out to be as fertile a field for researchers as it is for marketers.
Sites like Patients Like Me, which allow patients to share their treatment and symptom profiles and compare them to others in their community, may be part of a growing trend that meets the needs of patients, researchers and pharmaceutical companies to learn from the experience of those who are actually living with the condition. Do you have experience with patient data you would like to share? Tell us about it.
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(Photo courtesy of hill.josh via Flickr.)