More on Participatory Medicine: Patient Research

This post is adapted from one I wrote last week on e-Patients.net Blog: http://e-patients.net/archives/2009/09/participatory-medicine-and-patient-research-its-gonna-be-a-new-world-indeed.html.

Matthew Herper’s post about thalidomide treatment of Myeloma is a good example of how patients will contribute to medical knowledge in the future, and may form a cautionary tale for patients who get involved to this degree in formulating new treatment approaches.
I work with Bart Barlogie, MD, (quoted in the article as the physician who ran the first clinical trial of the use of thalidomide in treatment of Myeloma) who is an innovative clinician researcher who has extended the life of many patients with Myeloma with his treatment approaches. He is also treating my wife who was diagnosed three years ago with Waldenstrom's Macroglulinemia, a form of lymphoma that resembles Multiple Myeloma (she has responded very well to his treatment).

I was a good friend of Tom Ferguson, MD, who came to UAMS and was treated with thalidomide in 1999. Tom was also the founder of the “e-patient scholars” who started this web site and still meet annually. What he began has morphed to the budding Participatory Medicine movement, evidenced by the formation of the Society of Participatory Medicine and the soon-to-be-launched Journal of Participatory Medicine, which I will Co Edit along with Jessie Gruman. And that takes us back full circle to this story of a patient doing research about their condition as an example of Particpatory Medicine, which Tom strongly encouraged, facilitated and exemplified with his actions.

Whether Beth Jacobsen’s accusations about Celgene stealing her husband’s idea has merit or not is not something I am prepared to comment on. I’ll let the courts sort that out. But the fact that her husband pushed her physician to try a novel approach to try to save his life, and that it was tried (even though it didn’t work for him), is an example of what will happen increasingly in the “new world of Participatory Medicine”.

The article notes that, although Mr. Jacobsen didn’t respond to Thalidomide, the next patient had a dramatic response. Again, ironically, Tom Ferguson was one of the early patients who was treated at UAMS by Dr. Barlogie with Thalidomide. His Myeloma was rather advanced at the time, in 1999. Whether the Thalidomide was the reason or not, he did well for years after that. I didn’t meet Tom until much later, in 2005 and he died of complications of his disease in 2008.

So, he would undoubtedly be cheering with the knowledge that the treatment that helped him beat back his disease for over a decade was probably “discovered” by a patient who was practicing Participatory Medicine!

How many other clinical trials are out there waiting to be started by ideas engineered by patients who have the utmost to gain and the ultimate motivation–saving their own life.

Participatory Medicine: Patients doing research, usually online, and taking the ideas into the medical arena. Get ready, it’s going to be a brand new world!