What a wonderful story and I very much look forward to reading the full version in the Journal of Participatory Medicine.

However, the physician buyout will be the difficult route, particularly when looking for measurable results that can be justifiably used on our patients. Even then, what composition of the patient population is empowered and capable of pursuing this route?

CiscoGIII

part of the presentation that Norman did to Novartis regarding his new scale of the severity of side effects: “It introduced a new scale for rating the severity of side effects from the patient’s point of view, as opposed to the clinical trial toxicity standards established by the National Cancer Institute.

This last point requires some explanation. Scherzer, trained to conduct population studies, looked for the existing instruments used to report the severity of side effects. They were available from the National Cancer Institute, but Scherzer was surprised to find that side effect measurements were focused exclusively upon toxicity as opposed to quality of life. For example, a patient who developed diarrhea several times a day, every day, on an indefinite basis would be rated a one on the NCI Toxicity Scale of one through five, with five being death and one being the mildest rating. As an alternative Scherzer adapted a common pain-management rating scale of one to ten, with one being the mildest and ten the most intolerable and then asked Gleevec patients to rate a number of possible side effects using this scale. A situation like the one described above would rank as an eight or higher using this scale.”

Clearly the scale he invented was much more in tune with the experience of patients who were now living the unexpected life of patients suffering from a chronic condition instead of having to deal in an accute way with the side effects of a chemotherapy treatment.

There are many examples of great innvovation in patients communities. It;s just that no one has really payed systematic attention to it. Hopefully this will change now.

I traced over to the original WSJ article, and ha ha ha, we got one on them. They say “Researchers at Pfizer were developing Viagra to treat high blood pressure when they noticed during early tests that it treated impotence.” They noticed? Tom Ferguson reported in 2002 (cited in the white paper Chapter 5) that it was patients who reported the unexpected side effect that made the drug so popular – and not for BP (or angina, as Tom reported it).

My takeaway, as the white paper and the WSJ article make clear, there are enormous amounts of clinical research results that are unpublished, some of which never will be published, and others that are published and unknown, that could save lives.

And: nobody could possibly build a business model to justify hunting down that information – but patients sure can.

Knowledgeable patients can make a phenomenal contribution in such cases. Thanks.

Just as in this case, most rare disorder associations are staffed by patients and families of patients. Information, although available, may be disjointed and difficult to understand. These organizations also tend to be small and may not have a Chris Hempel as a member; but many share similar issues and could benefit from “cross pollination” under an umbrella group like NORD (the National Organization of Rare Disorders).

Readers out there: the Journal of Participatory Medicine wants to collect stories like this. In business lingo I call them “existence proofs,” a logical method that says “If something exists, that proves isn’t not impossible.” A story like this, as Gilles says, disproves those who would say “Hey, who’s the doctor here? Stop asking questions.”

Clearly, this story proves the existence of value from empowered caregivers. Well done, G-man.