Clinical evidence experience database for cancer therapies
Maxine Clarke
Wednesday, 20 August 2008 13:44 UTC
I thought this was an interesting point in a blog on the BMJ platform by Anna Donald, a person who has advanced cancer, in a post about the maddening things about living with the condition. (emphasis mine)
“One very maddening thing is the vast sea of confused and contradictory information about alternative (and mainstream) therapies, diets, supplements and the like. The lack of the most elementary information (eg cases or case series) about effectiveness, harm, and acceptability of treatment of about 90% of alternative treatments is woeful. While I know it’s difficult getting funding for research, at least practitioners could keep logs of who they’ve treated and what happened. I don’t buy the victim position of some alternative practitioners who seem to spend more time projecting anger onto the medical profession than figuring out how they might provide basic documentation about what they’re doing, for the future benefit of all their clients. The murky mess of claims and promises to people with cancer, who are vulnerable and lack any way of knowing what’s what, is quite unacceptable. We need a new form of Clinical Evidence of alternative therapies that summarises whatever information might be available, clearly stating none if that is the case, and what the treatment entails.”
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Replies
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This is certainly an important issue. I had a quick look online and the closest things I could find was the US National Cancer Institutes’s Office of Cancer Complementary and Alternative Medicine website, which does have a database of trials but requires quite a lot of navigating to find any useful information. Oh, and it only discusses National Cancer Institute research.
Alternative therapies are usually ignored by doctors (often justly so), yet some may prove beneficial in cancer patients, even if just to alleviate symptoms rather than cure. If a patient does try an unusual therapy and reports an improvement to their doctor, that information might well stop there.
An online database of individual cases, as Anna Donald suggests, would be the best way to keep track of what is and isn’t proving beneficial in patients with cancer. Doctors could report anecdotal evidence, then other clinicians and patients could search by disease to weigh up whether something they’ve heard of could be a help.
This approach isn’t exactly waterproof science, but anything to clear the waters for often desperate cancer patients has got to be a good thing.
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The September issue of Nature Biotechnology compared some online websites for patients, including one called PatientLikeMe that looks interesting in regard of this post. See this Peer to Peer blog entry for more information, links to the editorial and to the website(s) discussed in it.
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Thanks for highlighting this editorial. I think well-constructed and responsible websites like PatientsLikeMe are clearly useful for patients, but what was most interesting in this article was the descriptions how patient communities can be harnessed by industry, for example to recruit for clinical trials.
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