{"id":2148,"date":"2009-04-30T21:36:14","date_gmt":"2009-05-01T02:36:14","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=2148"},"modified":"2009-04-30T21:40:00","modified_gmt":"2009-05-01T02:40:00","slug":"immediate-data-requested-please-share-with-breast-cancer-patients-everywhere","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/04\/immediate-data-requested-please-share-with-breast-cancer-patients-everywhere.html","title":{"rendered":"Immediate data requested. Please share with breast cancer patients everywhere."},"content":{"rendered":"
Chapter 5 of the e-Patient White Paper is E-Patients as Medical Researchers.<\/a> 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.<\/p>\n A key sentence in Chapter 5 is “One of the great benefits of patient-initiated research is its speed.” <\/strong>It’s spoken by Norman Scherzer, who was mentioned in our April 3 post A wonderful story of participatory medicine<\/a>, and describes how when the medical industry falls short, e-patients can step in and gather vitally important data.<\/p>\n Here is another live example:<\/strong> Following my amazing experience with Her2 testing and Herceptin, as chronicled in my guest post Patient Community Knowledge Saves a Life<\/strong><\/a>, I\u2019ve 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. <\/p>\n The timing is exquisite, because the Journal of Clinical Oncology<\/b> in its wisdom JUST published a review of all the literature on Her2 serum testing and concluded there is \u201cinsufficient evidence\u201d for its use<\/b> in \u201croutine management.\u201d (Just the kind of words to get an e-patient all fired up.) <\/p>\n They want data? Let’s give it to them!<\/strong><\/p>\n I\u2019ve created an online survey, and would love to get it distributed virally through the breast cancer community.”<\/p><\/blockquote>\n
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\nThis survey and appeal are authored by Judy Feder, an e-patient who was a guest author here in March:<\/p>\n