Question ID: WS-18
Submitted by: Al Musella
January 30, 2011
Why isn’t there a national database of cancer patients [perhaps only include those cancers with poor outcomes] which includes their treatments and outcomes. Perhaps include all any genetic testing done. We have no idea how treatments work in the real world. Clinical trials have strict criteria, and exclude a huge segment of the cancer population. They also do not allow the addition of off protocol medications. In the real world, treatments are combined in unique ways and adjusted as needed instead of following a protocol explicitly. They are also used on older patients, sicker patients and patients who do not have access to major centers. We have no idea how alternative treatments and homeopathic treatments work. We hear of individual case reports of amazing success, but out of how many? IF there are 10 complete remissions out of 20 patients, we should look further into it. If there are 10 out of 10,000 – we can safely ignore it. But we have no idea how many users there are. There are many brilliant oncologists out there who are practicing the art of medicine by trying different combinations. Nobody is tracking this. The few who track them rarely publish them. We need a way to spot promising trends and then follow up on them. I set up such a registry for brain tumors – I call it the brain tumor virtual trial. See virtualtrials.com. It is patient reported treatment and outcome data, but it gives us a feel for what is working the best, and what is being tried. My experiences are that it is a worthwhile project and should be expanded to all poor outcome cancers, and combine patient reported with physician reported data. There is a unique opportunity now as the government is pushing doctors into using Electronic Health Records. We could easily add a meaningful use metric of submitting the data to a national database. A simple button that would take the data from the HER and submit it to the national database.
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