Chapter 5 of the e-Patient White Paper is E-Patients as Medical Researchers. It details how, in the absence of sufficient medical data for their cases, patients and parents have conducted extraordinary research, time after time, often stunning the medical professionals.
A key sentence in Chapter 5 is “One of the great benefits of patient-initiated research is its speed.” It’s spoken by Norman Scherzer, who was mentioned in our April 3 post A wonderful story of participatory medicine, and describes how when the medical industry falls short, e-patients can step in and gather vitally important data.
Here is another live example:
This survey and appeal are authored by Judy Feder, an e-patient who was a guest author here in March:
Following my amazing experience with Her2 testing and Herceptin, as chronicled in my guest post Patient Community Knowledge Saves a Life, I’ve been motivated and encouraged to take patient power into our own hands and create a registry of other patients who may have experienced the test I had.
The timing is exquisite, because the Journal of Clinical Oncology in its wisdom JUST published a review of all the literature on Her2 serum testing and concluded there is “insufficient evidence” for its use in “routine management.” (Just the kind of words to get an e-patient all fired up.)
They want data? Let’s give it to them!
I’ve created an online survey, and would love to get it distributed virally through the breast cancer community.”
Breast cancer patients, please take Judy’s survey (click here). And cross-post this freely on other blogs!