It's Time to Turn to Research's Most Valuable, Yet Underutilized Resource: Patients
By Margaret Anderson, COO, FasterCures
It's Time to Turn to Research's Most Valuable, Yet Underutilized Resource: Patients
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.
This kind of observational research, that focuses on empirical and experiential input, could prove invaluable in the quest to gain better understanding of disease and how it corrupts the functions of the human body. But there is more. Just as importantly, this story reinforces the contribution patients can make to their own medical care. In the search for cures, there is no substitute for patient engagement. For biomedical research to be effective and successful, it is imperative that it be patient driven. Empowering patients to play an active role in medical research requires transparent communication from trusted sources (i.e., frontline healthcare providers), a mechanism to ensure the patient's voice is heard loud and clear by decision and policy makers, the means for effective two-way communication between researchers and patients in real time, and informing the public about the value of clinical research to increase awareness and spur involvement.
FasterCures remains committed to supporting healthcare access but also in the creation of a “health cure” system that puts patients first.
So I contacted Frank Moss, director of the Massachusetts Institute of Technology Media Laboratory.
Dr. Moss, I read the piece on LAM and think this (Database) could also help Melanoma Cancer Patients. See I did a combination of clinical trials that jump started my immune system. I was told that I was a one off. Coming from a research background, I knew we are on to something big. So I researched my therapy. Here is the paper. Please if you got some time, take a look at it. Using the internet I was able to scientifically prove my theory.
Any Help would be greatly appreciated
Best regards
Response:
JIm,
Thanks for your note and very interesting paper. We are currently looking to expand the LAMsight approach to a more general platform that encompasses multiple diseases, perhaps melanoma could be included. Of course funding is an issue, but we are hopeful of cracking that nut in the near future. When we do we will get in touch.
Best,
Frank
________________________________
Frank Moss
Director of the Media Lab
MIT Media Lab
20 Ames Street, E15-401
Cambridge, MA 02139
Telephone: 617 324-3818
Fax: 617 253-8542
Take Care,
Jimmy B
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