QUALITY: Decision aids in the real world

Most of this morning at the FIDMD meeting has been largely technical stuff about setting up decision aids. Shannon Brownlee suggests that the name should be changed to “personalized medicine” which has been nicked by the bio-tech crowd for now.

There is progress in better patient information around systematically including patient preferences, values & desires at the point of care—particularly in prostate screening & breast cancer. (Good programs at Dartmouth, the VA local UCSF, Group Health of Puget Sound, and several other primary care programs in academic medical centers).I won’t bore you with the technicality of the decision aid methodology (because I didn’t understand much of it!)

All good stuff and all leading to the question, what happens when this starts to get mainstreamed because, (of course) better informed patients tend to desire less aggressive care? (Although interestingly there were actually several anecdotes about cancer surgeons & radiologists now pushing lumpectomy on some women who actually want the radical masectomy—so even when “do less” becomes the mantra it may not fit what patients want). But overall, this is a threat to the ability of patients to entreprenurially do what they want and get paid for it.

David Wennberg said it well— “be ready from the backlash from
organized medicine when this becomes better known”. And of course the
1993–4 experience of AHCPR being eviscerated by a coalition of back
surgeons, device manufacturers & Newt Gingrich in 1994 should be
still remembered by this group (Here’s Shannon Brownlee’s great article on it)

I’m a little troubled by the academic-ey notion of this group, while
the explosion in social media and Health 2.0 sites is looking at and
sharing ratings about the overall patient experience. So while these
very worthy folks here are setting up great programs, I really hope
that they’re being linked with the other aspects of what patients think
is great care. Increasingly that means basic non-medical stuff like —
being able to get an appointment easily on the phone or (gulp!
online!)a nice spa-like waiting-room, actually running the appointment
on time (e.g. not leaving a patient sitting for 3 hours in an
exam room as happened to a friend of mine in one of the AMCs presenting
here recently). That’s the kind of stuff that’ll be showing up in Yelp, Vitals, CareSeek,
RateMDs, Zagats et al. Whether the doc or organization used shared
decision making is actually more important in the end for sick people,
but probably not the part of the process people are going to easily
understand, and not something that will get them in the door.

So my hope is that the shared decision making piece of patient care
can be integrated much more strongly into that “better integrated
patient experience”. Because that patient experience is going
to be focused on by those entreprenurial back surgeons advertising in
the back of the airline mags. And my guess is that they’re not gong to
rush to using any decision aid that may help patients decide that
watchful waiting is the right course of treatment.

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maggie maharSCarrMGSummer BanksGregory D. Pawelski Recent comment authors
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maggie mahar

Shared decision-making is happening, at hospitals around the U.S. and in Canada. I wrote about it on my blog: http://www.healthbeatblog.org/2007/10/shared-decision.html and for Dartmouth Medicine: http://www.healthbeatblog.org/2007/10/shared-decision.html Research shows that when patients are given full information about the risks and benefits of an elective procedure (like a mastectomy, a knee implant, spine surgery or radiation for prostate surgery) or test (colonoscopy, PSA test for prostate cancer, etc.) 20 percent to 40 percent decide not to go ahead with the procedure. There are international guidelines for what counts as “shared decision-making.” The patient is given videos of similar patients talking about whether or… Read more »


Matthew’s got his finger on an important pulse: The power shift between clinicians and patients/consumers. And he’s right that although forward-looking physicians and organizations in the academic community are facilitating the shift through programs such as “shared decision-making,” they may still be caught by surprise when Internet-enabled consumers assert themselves. Just this morning, I read the following quote: “Through blogs and online communities, an enormous army of increasingly well-informed patients is forming, and we’re actually challenging the traditional model of health care in this country. With free access to all sorts of medical information, patients like me can drive our… Read more »


There is a world of difference though between patient satisfaction ratings and clinical decision aids. Like comparing apples and oranges.


There is a world of difference though between patient satisfaction ratings and clinical decision aids. Like comparing apples and oranges.

Summer Banks

The keystone of the Health 2.0 idea is the sharing of knowledge, experience and a helpful understanding of the patient experience with those who need the information the most, potential patients.
I am thrilled that our world is evolving and accepting their rights to a better integrated patient experience.
With websites like http://www.healthworldweb.com, these experiences can be shared, questions can be asked and patients can find doctors that are truly interested in their care.

Gregory D. Pawelski
Gregory D. Pawelski

In regards to Shannon’s hypothesis of “overtreatment,” a good benchmark assessment of it in cancer medicine has been the use of modern pre-testing technology like the molecular-targeted prognostic tests. These pre-tests enable the physician to more accurately determine who should be treated and who should not be treated.
Another needed change to the system will not be on the types of drugs being developed, but on the understanding of the drugs we have. The system is overloaded with drugs and under loaded with wisdom and expertise for using them.


Very interesting. Thank you (as usual).
The resolution of the key tension – “what happens when this starts to get mainstreamed because, (of course) better informed patients tend to desire less aggressive care?” – will be interesting to watch.
My hunch is there’ll be a lot of PR and semi-bogus research involved.