Kvetching about Susannah Fox and “Health 2.0″
This is a good example of the kind of “Health 2.0″ stuff that baffles me. The speaker in this video is Susannah Fox of the Pew Internet and American Life Project. She is speaking at the Health 2.0 Conference. You can watch the embedded video or read the text of her remarks (from here) beneath it.
After the market crash, there were quite a few people on the internet sidelines who were eager to say “I told you so” and warn people against the dangers of the internet. My favorite example is the 2001 press release from the American Medical Association suggesting that Americans make a New Year’s resolution to “trust your physician, not a chat room” since the information found online puts “lives at risk.”
So…is Fox actually disagreeing with those who think it wiser to seek advice from physicians than to take seriously medical advice received from anonymous strangers in internet chat rooms? As I see it, acting on medical advice from an unidentified, unqualified strangers on the internet can “put lives at risk.”1
Of course most people ignored that advice and flocked online for health information, just as they ignored the advice of the recording industry and flocked to music downloading sites.
This analogy to the recording industry is a very poor one.
If a consumer illegally downloads an mp3 of a commercially-available pop tune instead of buying it on iTunes, he is essentially getting the same product (the same audio, compressed for fast downloads) in a superior version (no DRM) for a lower cost (free instead of about a buck). If a consumer goes to an unidentified stranger in a chat room, he’s probably not getting a qualified physician (at the very least, he has no assurance that the person he’s taking advice from has the appropriate education and skills to dispense advice), so he’s consuming a significantly inferior product.
When the RIAA advises people not to download songs illegally, they do so because they believe illegal downloads erode the profits of the recording companies. It cannot, however, be argued that pirated music could do harm to consumers. When the AMA advises that doctors are a more trustworthy source than strangers in chat rooms, they very well might be trying to protect the income of primary care physicians- but they’re also right that medical advice from unqualified, unidentified providers can cause harm.
Fox goes on in the extended text version of her remarks:
But let’s give the AMA some credit. Inaccurate and outdated medical information does exist online.
To say that “[i]naccurate and outdated medical information does exist online” is an awful understatement that seems to erroneously imply that online healthcare misinformation is rare.
Medical librarians say people should check the source and date of the health information they find online. But few sites display those quality markers and few e-patients look for them.
First, medical librarians judge the quality of an online resource by a whole lot more than just the source and date.
Second, really reliable sites absolutely do display these markers. If few patients look for quality indicators, the reasonable solution is to help healthcare consumers be more discerning and to help guide them quickly to quality information. One way physicians and other healthcare providers can help their patients do this by directing them to MedlinePlus. Also, if consumers don’t have the information literacy to navigate the health information published online by authoritative institutions like the National Library of Medicine, how the heck are they going to sort through the inevitably massive amount of information put up by other consumers?
I do not believe that online resources collaboratively created by patients will solve the problems and dangers of healthcare misinformation online.
Let us say that a healthcare consumer has heard that ginkgo biloba will help improve his concentration. He visits MamaHerb (a consumer-created wiki for “natural remedies”) and decides there’s no reason why he shouldn’t start taking ginkgo.
MedlinePlus, on the other hand, goes into significant detail about potential risks and reasons why our consumer might want to reconsider or discuss with his physician before taking ginkgo.
Semantics
Some will probably say that I’m defining “Health 2.0″ too narrowly. After all, the term only makes sense if it refers to the application of “Web 2.0″ trends to the needs of healthcare consumers. The Health 2.0 Conference apparently featured Phreesia, an service which I cannot work out a way to describe as “Web 2.0.”. 2
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March 11th, 2008 at 1:27 am
From a November, 2006 Pew study, Ms. Fox talks about e-patients checking the source:
http://pewresearch.org/pubs/265/seeking-health-online
Just 15% of health seekers say they “always” check the source and date of the health information they find online, while another 10% say they do so “most of the time.” Fully three-quarters of health seekers say they check the source and date “only sometimes,” “hardly ever,” or “never,” which translates to about 85 million Americans gathering health advice online without consistently examining the quality indicators of the information they find.
March 12th, 2008 at 1:06 pm
Hi there,
I’m a huge fan of medical librarians and of kvetching, so first, thanks for the critique.
Second, I’ll defend my remarks by saying that I was an early-morning speaker with just 15 minutes to wake people up & spark debate. I do hope that some people will take advantage of the Pew Internet Project’s free publication of our reports and data sets to explore our findings in more depth! See: http://www.pewinternet.org/PPF/c/5/topics.asp
Finally, thanks very much for the reminder to post the AMA release:
http://www.e-patients.net/archives/2008/03/flashback_to_20.html
March 12th, 2008 at 1:20 pm
Thanks so much for posting the press release, Susannah! I hope to give it good critical reading this evening. I have read each of the reports you link to and frequently find them interesting and useful.
March 13th, 2008 at 5:34 am
[...] She said she posted it by the popular demand (of one), but I also was glad she posted it (so increase the count to two, Susannah!), and followed the link to another blog post that was critical of her presentation at the Health 2.0 conference. In that post, the author said, “is Fox actually disagreeing with those who think it wiser to seek advice from physicians than to take seriously medical advice received from anonymous strangers in internet chat rooms?” and I wanted to comment on this as someone sitting in the audience (and who got to catch up with Susannah shortly before she went on stage – ok, so I am disclosing that I am a fan). [...]
March 13th, 2008 at 3:41 pm
You wrote: “As I see it, acting on medical advice from an unidentified, unqualified strangers on the internet can “put lives at risk.”
We have been hearing this for close to 15 years now and NO ONE has been able to report a single case of “death by Internet medical information”.
OTOH, we hear daily of doctors misdiagnosis, wrong treatments, lack of knowledge about the treatments they prescribe and the list goes on.
Millions of Americans in need of medical advice have flocked to online medical communities primarily because they know they have a responsibility in helping their treating clinicians find the best “current” regimen.
The time has come for doctors to accept they just cannot do it alone anymore. The democratization of medical knowledge is real and is already profoundly transforming the quality of care for many rare medical conditions. The lessons learned in those communities should be applied to the rest of medicine!
Gilles Frydman
Founder
ACOR.org
March 13th, 2008 at 9:21 pm
Pleased to meet you, Dr. Kvetch!
You can guess where my views lie, heh.
I’m a live (I’m happy to say) specimen of what e-patient and participatory medicine is all about. Long story short (it’s on my blog) I went through and adventurous 2007 discovering and beating a Stage IV, Grade 4 kidney cancer, using a large dose of participatory medicine practices, without having ever heard the term (nor e-patient).
In my day job I do analysis of business trends and processes, and I see a heap of similarities between the participatory trend and what’s happened in technology in the past 20 years. And, being an engineer by training, I too snort at fools; I spend way too much time responding to idiot email rumors by digging out the Snopes.com debunk links and doing Reply All to the unwitting masses.
My point is that I’m no gullible fool, and, when my life truly depended on it, I e-patiented my butt off. Please read my comment on the e-patient blog.
Hope to meet you someday – and thanks for the PDF tools link! (My tech career has largely been in graphic arts so I lust for this stuff, and 15 of your 16 are new to me.)
March 14th, 2008 at 7:23 am
[...] In september 2007 schreef ik naar aanleiding van een Health 2.0 congres over Health 2.0 initiatieven. Inmiddels is er alweer een tweede congres geweest. Ditmaal vond dat plaats in San Diego. Niet alle presentaties worden enthousiast ontvangen. Helaas was ik er wederom niet bij, maar dit congres is wel een goede reden om te kijken welke initiatieven er zijn bijgekomen en welke informatie er op Health 2.0-gebied beschikbaar is gekomen. [...]
March 18th, 2008 at 11:02 pm
[...] I got a number of interesting responses to my post on Susannah Fox’s brief speech. [...]
March 25th, 2008 at 9:47 am
I just wanted to say that I personally really appreciated the deep thinking you put into the post, and the overall courtesy and upbeat nature of the dialog. This is a really useful and productive conversation, and a great example of the best of blogging!
March 25th, 2008 at 2:15 pm
That may be the nicsest thing anyone has ever said about my blog, Patricia. Thanks.