Delighted to see you involved in this conversation! I want to keep some answers for the Boston conference:-)

Let’s just say that, IMO, Healthwise is very, very good at providing answers for many diseases and not as good for some others. And then there are some diseases where patients-produced information resources are clearly better than what you provide. To me that remains a mystery.

I think we’ve already discussed it, but if I’m not mistaken, there are no links to ACOR on any Healthwise document that relates to cancer. Is it because we do not fall into the category of evidence-based resources? If I’m mistaken, please accept my apology in advance.

So here is what I propose: since you say that last year alone there were 1/2 million queries about self-help groups, I suppose than more than a few had to do with self-help groups for cancer, which I would consider my area of expertise. Can you prepare for the Health 2.0/Ix conference the list of self-help groups that you link to on the various Healthwise pages that provide information on cancer? I’m sure we shall have an interesting conversation.

that last sentence “I have learned more in the last 24 hours here than I have in a whole year from my doc.” is what we are collectively experiencing, daily, on the variety of patient-focused social networks we all manage. In a sense it only shows how so many doctors are so poorly prepared, if at all, to provide valuable information to the patients they treat.

If people were satisfied with the information they get from professionals you would not have 23,000 subscribers and the Kidney cancer list (not one of the big cancers) with 2,000 subscribers. This is all about shared knowledge, with whichever technology we provide.

Now, how do you reconcile the idea of shared knowledge, often via unstructured conversations, with the concept of Ix, remains a mystery.

Yes, it’s all about learning — either proactive patients finding and using H2.0 tools on their own, or Ix in which medical professionals encourage patients to learn important things about their conditions (hopefully taking advantage of H2.0 tools in the process).

@John Grohol – right. The labels are irrelevant. But in case you’re wondering if these more sophisticated “shared learning” tools (beyond email) really help people, have a look around here: http://www.diabeticconnect.com. 23,000 members and counting.

Every day we get people saying thing like this:
“I have learned more in the last 24 hours here than I have in a whole year from my doc.” – PatW

All I have to say is, for heaven’s sake, people, TELL your physician what you’re thinking!! You’re allowed!

Most patients I have talked to never discuss their “first opinion” from the Internet with their doctor nor mention the concerns raised by what they read. The reasons include feeling rushed, not knowing when and how to bring it up, not wanting the physician to feel threatened, and wanting to test the physician’s diagnosis or how up-to-date his or her knowledge is. Not having this discussion can undermine what should ideally be a trusting relationship.

Information therapy is the flip side of the coin. If a consultation includes a discussion of the Web sites a patient used, a physician can more easily “prescribe” with an understanding of the patient’s Internet behavior and preferences.

Many of the stories I have heard involve patients who didn’t disclose their “diagnosis” but then distrust the one they receive since they didn’t receive an explanation for why the other was not accurate, or who obsessively searching for answers including cures to diseases for which no cure is yet known. Information therapy needs to be part of a dialog to really help patients.

I present some of these stories and discussion about the role of the Internet in patient-physician consultations in a paper I presented at CHI 2009 at http://lisagualtieri.com/2009/02/16/the-doctor-as-the-second-opinion-and-the-internet-as-the-first/.

I understand how a therapist could seek to alleviate a patient’s anxiety through information, but research itself is empowering, as is doctor respect.

Pediatric oncologists love to commission studies on parents’ ability (or inability) to cope with a cancer dx in their child. None, to my knowledge, has paid for a study of the role of standard institutional practices, including withholding of records and key information, in CREATING stress and anxiety. Check out the documentary on children’s cancer, “Lion in the House.” It’s eye opening

This is what is meant by bottom up remaking of practice.

See, I’ll FEEL BETTER if I can verify a physician’s credentials independent of his colleagues reassuring me tha, “Dr. X is the best. Trust us” when they or their institution have made serious errors at all levels. I’ll FEEL BETTER when I have reports in hand so I can insure accountability.

Gilles is exactly right. It’s the people, not the technology. It is education and common sense. The goal of ACOR members is to stay alive, not feel better. Get me email and a xerox!

IMO, the information that the patient holds is as or more important than the information the clinician is ready to prescribe, so what we need is a conversation, back and forth, both learning, and better health actions result, that whole dialectic thing.

This is not something one can bill for, but it is the only type of ‘information therapy’ that works for me and my patients. Having good content to provide patients in the optimal context is a good thing, but it’s not therapy.

I look forward to Boston and learning more from the thoughtful folks above who have been looking at this long and hard.

(The connection may not be obvious. It’s this: both reject the assumption that the best path to success is to just do what the establishment says.)

Clayton Christensen of Harvard Business School is the author of the “disruptive innovation” concept. His new book applies his years of research to healthcare, and from what I’ve seen its reasoning is solid.

I haven’t plowed through the book but conveniently there’s an excerpt in Forbes.

It may be a little deep for people who don’t know his lingo and his thinking, but basically he says that the way things are organized today isn’t working (duh) and a key reason is that things aren’t organized around gettin’ the freakin’ job done, but are instead evolved out of processes designed for other purposes, which no longer serve the purpose. And we’ve got our heads stuck so far up our precedents that we can’t see daylight anymore. We keep trying to find our way out, and there isn’t one.

As some of us have started saying here, Christensen believes that the solution won’t come from making those entities less inefficient, it’ll come from basically ignoring them and building new solutions that ARE designed, from the ground up, to get the job done.

you wrote “Information therapy, Ix, Health 2.0, self-help groups, ACOR and a thousand other words and phrases are all centered around a common purpose which is to help people make better health decisions and to feel better about the decisions that they make.”

I have to respond because that is NOT what ACOR is centered around. ACOR provides simple tools and complex human interactions to promote the concept that people OWN their health, their body, the centralized tissue banks they finance and a growing amount of the best science advancing our understanding of their disease. The empowered patients really transform the power structure. Hence trying to put corporate labels around what they do will ultimately fail, in my very personal opinion.

We also show our users that in the 21st century they should approach medicine from the viewpoint of Verify First, Trust Later. This is really why ACOR has been so disruptive from the beginning since 1/2 million people or more have learned that if you suffer from an unusual condition

putting blind trust in a doctor can kill you much faster than reading any amount of non-evidence-based information!

Too many repeaded stories of stories shoved around, not receiving the appropriate treatments, discouraged, often strongly, by their physicians to go learn about their medical problems on their own.

We also have too many stories of patients educating their doctors about some aspect of their disease. Anyone who has entered the cancer continuum that can easily be anyone of us) has a responsibility to become informed, INDEPENDENTLY from their physicians, about their condition. Their life can easily depend on this fact, that negates in many ways, the concept of Information Therapy as you have developed it over the years.

Of course, for the segment of healthcare where algorithmics can do wonders your concept of Information Therapy is a great public health tool. Trying to make the concept valid for the entire world of medicine will just diminish it power and generate strong disagreement from those of us who have witnessed the unencumbered growth of patient groups who were seriously dissed by almost all medical professionals until recently.

So my take-away from the responses is simply this — Ix is whatever we make it out to be, as is Health 2.0.

@Don, Sharing personal stories and sharing personal experiences is not nor has it ever been “Health 2.0″ any more than writing a book for a Kindle is “Book 2.0.” Sharing personal stories/experiences is most definitely Health 1.0, as shown by the multitudes of online health communities online since the 1980s. Yes, the 1980s. C’mon folks, stop trying to convince us any of this is “new!” It’s not.

@Matthew Holt, you keep talking about how Health 2.0 has changed the ‘scale’ of what we’re talking about. Do you have any data to support that supposition, or is that just your opinion? Because, again, it just sounds like marketing-talk from someone who’s job it is to pound the Health 2.0 drum. I’ve looked, and I can’t find any data to support that somehow “Health 2.0″ has actually helped reached more — different — people than if the term had never been coined.

In other words, hate to say it, but the emperor is a little clothes-challenged.

Do these technologies help people? Yes. But can’t we just call them what they are and stop morphing the definitions to be “all inclusive” to the point of meaninglessness? As I noted, a simple Google search under the current definition fits in fine with “self-prescription,” and Don is telling me that a mailing list for depression in 1989 fits the definition of Health 2.0. It’s no wonder healthcare needs fixing…