I am sick & tired of the advice given to people looking for medical information on the internet. All the content evaluation guidelines say the same.
Look for sponsorship, currency, factual information and audience.
A recent CNN Empowered Patient entry states
“So if you’re trying to find medical information for yourself or someone you love, and you’re not lucky enough to have access to a professional research librarian, what do you do?
“The Empowered Patient” assumes you already know the basics of good Internet searching: .gov and .edu sites are to be trusted, as are sites for major health centers (think MayoClinic.com) and health organizations (such as the American Cancer Society’s cancer.org).
Let me tear apart some of these guidelines because they so clearly represent guidelines from the last century.
The guidelines available on the “trusted” websites were all conceived between 1995 and 1999, when information available was entirely static. That was before anyone had written about the long tail, the wisdom of crowds, community intelligence, and e-patients. They all predate the introduction of social networking sites. In short they COMPLETELY miss the point of the current use of the internet, as a disruptive technology leading the democratization of medical knowledge by opening access to countless repositories of scientific information and fostering the growth of innovative medical online communities.
Once you have opened the Pandora box by letting the world have unhindered access to PubMed you cannot expect that people will be satisfied with the safe and stale information available from “patient-oriented” information websites prepared ala “Health 0.1” by so many large medical organizations. The American e-Patients demand a lot more and they rightly deserve a lot more.
We, the e-Patients, do not want to read medical information from the trusted and vetted static websites. We need accurate and current information about our current medical problems. And with the explosion of new targeted therapies these problems are going to multiply, leaving almost any health professional unable to keep track of all the side effects of the therapies they prescribe. It is a trend I am noticing for a few years and it is clearly accelerating. In fact the acceleration is such that now it is almost a given fact that “trusted” static sites cannot produce web accessible pages containing the information we so desperately need.
An example is in order. RCC, renal cell carcinoma or kidney cancer, has an incidence of about 51,200 cases in 2007. It is a fairly uncommon cancer but it is treated by a large number of clinicians. Prognosis of RCC patients is still dire, with about 25% of patients diagnosed at stage IV and a 2-year survival for those patients at about 23%. 3 recent drugs have been added to the available treatments which until then were seriously deficient. The 3 agents are new targeted antiangiogenic agents (Sutent, Nexavar & Thorisel). 9 additional drugs are in the pipeline, in phase III trials. 5 are targeted therapies and 4 are immunotherapies.
Doctors treating RCC patients are suddenly faced with an exponential need for in-depth scientific information, even before large cohorts of patients have been treated for long periods of time. e-Patients have naturally started to fill in this growing gap. They ask daily their peers about a very wide array of side effects for each one of the newly approved antiangiogenic agents and are even able to conduct conversations about the potential benefits/risks of a treatment their doctor has recommended. These decisions are often made with the use of medical information newer than what they physicians have access to, unless they practice in a large and specialized oncology unit.
Just yesterday, a patient wrote to the ACOR group (with over 1,500 members) about a very unusual side effect. Acting on behalf of the RCC patient, I followed the advice from CNN:
There’s a lot of junk on the Internet. “It’s the wild, wild West out there,” says Alan Spielman, CEO of URAC, a company that certifies health Web sites. “You really have to be alert as you go through these sites.”
To get rid of the junk, use a search engine that looks only at reputable sites that have been vetted by health professionals. Dirline, run by the National Library of Medicine, is one such engine, as are medlineplus.gov and Imedix.com. Healthfinder.gov searches for information on government health Web sites.
I did look for information about the side effect in MedlinePlus (the current darling of those who are afraid of the unbridled medical internet). I did and couldn’t find anything. I went to the FDA site and read the entire official insert label for the antiangiogenic agent mentioned by the patient. No mention of that side effect! Of course because to be trusted and safe the information has to be written at 6 grade litteracy level! Still interested I went to the National Cancer Institute, the American Cancer Society and the American Society of Clinical Oncology websites. Searches in these 3 reputable sites didn’t produce a single result!
It turns out that only the sites who have licensed the Merimedex drug database have information about this rare side effect. And, of course, the 3 patients who responded to the inquiring patient, while I was spending my time trying to get an answer from the trusted and vetted sites. Thanks to their combined answers, the 4 now know that they must have their liver functions tested immediately following the development of this rare side effect. A prime example of the power of participatory medicine!
If presenting clear and current Health websites guidelines to the American public is important, it is the responsibility of the organizations who designed the original guidelines 1.0 to come up with the 2.0 version. HON, URAC & the NIH could lead the way. Just look at the HON Code. No social networking site could ever apply for certification. ACOR certainly cannot, since so much of the information given from patient to their peers is not authoritative in the classical way. ACOR doesn’t replace the doctor-patient relationship but unfortunately many patient to patient communications replace the non-existing communication between patients in urgent need of advice and doctors overwhelmed and unable to respond to their patient needs. But as I wrote in another blog comment, in 15 years, no one has ever reported a single “death by internet medical information”. Quite the contrary.