Comments on: More on “Health 2.0″ and patient-generated online information

By: Health 2.0 links for 03-24-08 | The eDrugSearch Blog

Health 2.0 links for 03-24-08 | The eDrugSearch Blog — Mon, 24 Mar 2008 18:55:27 +0000

[...] More on “Health 2.0″ and patient-generated online information (DavidRothman.net) [...]

By: e-Patient Dave

e-Patient Dave — Thu, 20 Mar 2008 00:39:42 +0000

One more thing (boy do I say that a lot) … the issue of well-respected web sites being potentially harmful (or at best misleading) means that I’d advise a friend, “Trust a physician who keeps current on your condition, not a web site that might be very stale.”

Then you run smack into how you can know who keeps current on your condition. Not to sound like a broken record, but I got that answer on ACOR.

By: e-Patient Dave

e-Patient Dave — Thu, 20 Mar 2008 00:13:42 +0000

I nothing to say about the RIAA thing – haven’t talked to her to see what on earth she was thinking.

Re more & better education and tools, I couldn’t agree more. I don’t know where to start on that, other than waking people up. It’s a big question.

Re “trust your doctor more than a chat room,” in this case I think the devil is in the possible interpretation. A lot of lay people I know would construe that as meaning “don’t go messing around online.” (Yes, I *know* that’s not what the AMA said.)

Pls note, btw, I didn’t just say “bill of rights” – I said rights & responsibilities.

—Hey, I meant to say, that fourth “I didn’t say” bullet is almost unparsable to me. Does it untangle to “support groups run by pharma probably aren’t as good for pts as they could be”?

By: David Rothman

David Rothman — Wed, 19 Mar 2008 16:16:40 +0000

Dave, I don’t think we disagree on anything here.

I only argued [1]that the advice from the 2001 AMA press release (”trust your doctor more than a chat room”) was and still is good advice and [2] that Susannah’s comparison of the RIAA to the AMA was a terrible analogy.

You appear to agree on the first of those two points and have decided to disregard the second. That’s fine.

But Gilles went off on a tangent and started arguing points I didn’t make. I had hoped that this post would clarify that…but it appears perhaps that it did not.

We seem agree that some doctors aren’t as good as they should be and that every patient has the right (and more should exercise it) to self-educate and self-advocate. But haven’t these things always been true?

But long before “”participatory medicine” and “e-patients”, smart healthcare consumers educated themselves and advocated for themselves.

More than a bill of rights, we need more and better education and tools for health information literacy that will aid the patient in seeking out information and pursuing the best available treatment from the best available providers.

I will read the e-patients white paper- it was on my list, but your suggestion moved it to the top. Thanks!

-David

By: e-Patient Dave

e-Patient Dave — Wed, 19 Mar 2008 07:02:46 +0000

Well, there’s a lot to chew on here. Thanks for keeping the conversation open.

> no online resource “can replace a
> physician’s experience and training.”

I think there’s a danger here of mixing our examples and ending up with apparently contradictory views on what are actually different questions.

I say, there is no substitute for a good doctor’s skills in the art of medicine.

I say, too, that (as the e-patient white paper http://www.acor.org/e-patients/ powerfully establishes) no doctor can possibly keep up with all the relevant new information being published, even just the best journals, unless said doctor is in a sub-sub-specialty and is actually authoring some of that material, with blinders on the rest of the world.

Those are two different questions. And in contrast to “no doctor can keep up,” e-patients and their “support crew” have all the time in the world to go deep on their sub-sub-specialty of 1.

David, pardon if you’ve answered this before, but have you had a chance to read the white paper? It really turned my head around. Pretty quick reading, too.

Personally, I wouldn’t get medical advice from “some chat room” full of unknown people any more than I’d get financial advice from a chat room full of unknowns. But remember, *every bit* of misleading information that I got came from well-trusted web sites. They, too, cannot do it alone anymore.

I say, what we need is well-trained, trustworthy peer communities.

I’m working on a draft e-patient bill of rights and responsibilities, and increasingly it’s coming down to empowered participation (”participatory medicine”). One aspect is empowered patients getting smart about digging up information, using it themselves for simple matters, and, where things get too deep, bringing it to the table with their smart expert doctors – and listening to what the doctor says.

But that presumes you’ve got a smart expert doctor. Which brings us to…

> no bright physician is trying
> to “do to alone.”

This is a sticky and sad one.

You and I are out on the frontier, but I’m truly sad to say that if you listen in for a week on an ACOR listserv, e.g. the KIDNEY-ONC one that I used, you’ll see that in the real world, way too many patients are actually dealing with doctors who, by your criterion, would qualify as “not bright.” They have seriously outdated information, and/or they simply tell patients to just trust them – and sometimes get hostile when questioned.

What are we going to do about those “not brights”?

The only solution I see is to tell *everyone* that they have a right and an option to educate themselves, and to support them in doing so wisely. And I believe that’s the point where your view and mine converge. Agree?