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Participatory Medicine

There is a new eponym about to erupt in health care  PM. which is short for Participatory Medicine.

Participatory medicine: A high-tech alliance with patients


Charles Smith M.D., who blogs at eDocBlog, tells a story,

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).

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”.

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!

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!

Dr Smith, I can’t disagree with your assessment, but this is not a new phenomenon, such as the new world order.  It has been going on for decades as far as I know.  I was exposed to this each day in my practice. PM is just a new eponym for an old process.  I’m certain Dr. Smith already knew this, but gives it a new name to draw attention to this for patients.

What is different in 2011 is that doctors are much busier seeing larger numbers of patients, and face time is markedly reduced, so that patients must be encouraged and pro-active to ask questions that are directly focused on their own problem.

What is also different is the growing use of EMRs. In  the past, physicians  would adjust their examination (and history) on relevant answers or findings on the physical examination based on their knowledge base of information built on years of clinical experience. Much of the process was fast and unconscious, and based upon previous learning and experience, much as we all experience such as riding a bicycle.

The current generation of EMRs does not allow tree analysis of the history and examination, truncating the process into usable information. The physician or assistant is forced to enter much useless information.

What our current EMRs produce is an endless repetitive list of information, which may be more readable but is offset by the prodigious meaningless amount of data.  Most of this information will never be read, again.

The amount of processing power would be awesome to develop the tree analysis to structure a meaningful history and  physical examination,and. probably too expensive unless it was rendered in the ‘cloud’.

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