Amy, I wonder if you “chronics” and we “dying now” people have something important in common: we weren’t just rummaging with a sorta-interested attitude, we really had motivation to find what REALLY matters.

See my post on “Patients vs. Healthcare Consumers” at
http://www.diabetesmine.com/2009/02/%E2%80%9Cpatients%E2%80%9D-versus-%E2%80%9Chealth-care-consumers%E2%80%9D-both-if-you-ask-me.html

because the world of patients is made of “some, others and then some” the conversation that took place on e-patients.net missed an important dimension.

You have to put Ix in context, like everything else related to Medicine. There cannot be a single, unified model that will fit every situation, and that is IMHO, something we should all clearly acknowledge.

Just as different patients require doctors to constantly adapt to different models of patient-doctor relationship, so will they require the doctors or information providers to adapt to different models of information provision. Who said this was going to be simple!

Over the last decade, I have conducted both structured interviews with patients/caregivers and observed them in clinical and home settings. What those experiences have taught me is that people with serious conditions (and they don’t have to be rare) often want to go deep in the specific health information that they need to help them deal with those conditions.

Part of the question is: How do they get there? Trust is a huge issue. For some, as Gilles points out, they have lost faith in their clinicians (or never had enough of a relationship to deal with) and they become autonomous. But for other patients, they want significant guidance from their clinicians. Still, others want it from another trusted source — see Susannah’s past “Dr. Mom” references.

Pew Internet surveys show that most people are likely to say that a professional is their top choice for help when they are dealing with a health issue (which is different from the other topics we ask about, see “Information Searches That Solve Problems” http://www.pewinternet.org/Reports/2007/Information-Searches-That-Solve-Problems.aspx).

Yet Gilles points out another issue — people with rare conditions are not “most people.” They are out on the long tail of health information. A professional that can help with “every day” issues like pregnancy, diabetes, or the flu may not be equipped to help them connect to the very latest research on their particular disease.

that is exactly because the professional prescribing partners are so notoriously bad at providing the information ( i won’t even go as far as tailoring, something that may take many years, IMO) that many patients have been using services like ACOR. In the process of getting informed by others (often because they could not get the info from their providers) some of them will become autonomous. It is an amazing transformation to witness.

Of course, the characteristics of the ACOR subscribers are different from the average person looking for health info. They rely a lot more on their peers and much less on books and less on doctors, since most doctors don’t know anything about their disease and this lack of knowledge translates easily into a choice of life or death. But I keep in thinking, if that model works so well for people with deadly and unusual conditions why couldn’t it work just as well for the rest of medicine.