Have you joined the Society for Participatory Medicine yet? It sounds like you’re practically a member. It’s cool – co-chairs are a patient and physician.

Thanks for pulling us (me?) in the direction of rigor.

The point of my citing the “plural of” saw was to acknowledge that I don’t think a set of anecdotes constitutes a rigorous finding. (Too often I hear from people who’ve read something on this blog and think all patients are idiots about reaching conclusions. Those people haven’t read much of the blog, but I try occasionally to head them off.)

And yes, when my physician (and Society VP) Dr. Danny Sands speaks to professionals, he counsels them to coach patients. The other day in Ontario he suggested simple steps: Ask the patient if they browse; ask where; and ask if they’ve found anything good. Because, he says, it’s not unusual for patients to show him something good that he hadn’t seen yet.

Trumping all of this, I think, is the vitally important awakening that’s needed on the part of patients, physicians, administrators and policy people: (a) healthcare isn’t nearly as reliable as we all have come to think; (b) patients have far more power to contribute usefully to this situation than most would imagine.

Hence the tagline in our blog’s title: “Because health professionals can’t do it alone.”

The statement “the plural of anecdote is not data” attemtps to dismiss anecdotal evidence as meaningless, which it most certainly is not. The plural of anecdote, I would argue, is evidence. Like all evidence, the anecdotal variety requires a degree of mitigation–not necessarily vetting, but that’s one means of mitigation.

As for Ms. Fox’s question about improvements in Internet resource-gathering over the past five years, I doubt you’d get any different polling data. Most readers are not trained to determine the validity of sources. Fortunately, a number of the larger available sources are getting more thorough at obtaining validation for us. Look at Wikipedia or WebMD, for example. Both have gotten much better in the past half decade at obtaining and dating their sources. Wikipedia even regularly annotates entries to point out where source data are needed.

We’re getting there. The Internet is not, on its own, a reliable source of information. But it’s getting there.

Training e-patients to check their sources is a good idea, but perhaps it would be easier to teach physicians to ask e-patients if they’ve verified their sources. I’ve had to train my doctors in this. Each of them initially wanted to discount information I brought to them from Internet sources. After I demonstrated that I’m careful to check my sources, though, they’ve each learned that saying, “I downloaded this” doesn’t automatically discount its validity.

Apologies for the broken link, and thanks for letting us know. I fixed it.

Yes, if all I did was link to our own stuff it wouldn’t add much value. :–) As you’ll see, it links to a piece in MIT Technology Review.

In a comment on the original post at KevinMD, he used the term “the age of exponential data.” Google says the phrase already existed, but I’ve never heard it applied to healthcare. It’s a great addition to the points in the e-patient white paper about the information explosion.

I’m adding this to the one he spouted at the ICSI / IHI Colloquium last month: “All knowledge is in constant beta.”

I remember reading that “needle in a haystack” report last year! I couldn’t agree more that it needs to be repeated, to see how things have shifted (or not) in the 4-5 years since that data was collected.

To the point of our headline: are e-patients wising up? If not, let’s get to work!

One reason I can’t wait for the video to be posted from Health 2.0 Paris (I understand there’s an issue with the recording – English audio overlaying the French) is b/c information quality was a significant part of the conversation. Who decides which information is worthy? Who is guiding people, and to which sources? Is there a need for regulation of health information?

It was such a dominant theme that I would like to reprise some survey questions from 2006 regarding how consumers decide which information to trust online. Of course I’d also love to field those questions in the EU to obtain a comparison sample.

See:
Online Health Search 2006
http://www.pewinternet.org/Reports/2006/Online-Health-Search-2006.aspx

Summary:

Most internet users start at a general search engine when researching health and medical advice 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. Most health seekers are pleased about what they find online, but some are frustrated or confused.

Within the report I qualified that finding:

Health seekers might be forgiven if they give up what at times is a search for a needle in a haystack. A recent study commissioned by the U.S. Department of Health and Human Services (HHS) finds that a tiny percentage of health sites display the source and date of the information on their pages.

And now, of course, we know that “health sites” represent only part of the information stream coming into consumer’s search results and explorations. Advice is welcome on how to ask people how they tell good information from bad on social network sites, blogs, etc.

there is a great difference between talking about things and providing replicable proof that what you offer is of any value to our users. I don’t remember seeing any form of validated study showing that your site or technology offers services that benefit patients. I would love to see such a proof. Saying “”it is just so” multiple times doesn’t provide that proof.

The ACOR site is broken beyond simple repair. It requires a full redesign. But the remarkable aspect of it is that even with a broken website ACOR is helping about 8,000 more people than 6 months ago. And that is irrefutable evidence that the main services offered by our organization are of real value. How many users are using your site, BTW?