“Back to the Future: Doc Tom’s e-patients emerge in shared decision-making” (post on the BMJ blog)

I was honored (okay, thrilled) to attend last week’s Salzburg Global Seminar on healthcare, titled “The Greatest Untapped Resource? Informing and Involving Patients in Decisions about Their Medical Care.” (I mentioned it last month, writing about a historic Salzburg Seminar in 1998.)

This time more than fifty participants from fifteen countries met for five days to learn about SDM (shared decision-making) and related subjects, and discuss how we can change the culture of healthcare. I got the chance to address the group for 15 minutes one morning (that was fun!), and was invited to contribute thoughts for the blog of the British Medical Journal. “Doc Tom” Ferguson, founder of the e-patient movement, wrote several things for the BMJ, so I decided to tie this event to that precedent. The resulting post is here.

Related items on e-patients.net:

• December 12 post introducing the subject and soliciting patient input
• Practice variation – the first of several follow-up posts about what we learned. This post introduces the new book Tracking Medicine, which recaps the 30-year work of Jack Wennberg and colleagues at Dartmouth, analyzing vast amounts of Medicare data to understand how we actually spend our money. As the post explains, we think medicine is practiced scientifically from a common body of knowledge, so we’d think it would be pretty consistent, but the data show it’s common to have threefold, fourfold, or even greater variation in what doctors recommend, and it pretty much varies by geography, with no rhyme or reason. If your doctors recommends surgery, wouldn’t you want to know that most doctors elsewhere wouldn’t?

As always, my interest is not to tear anything down, it’s to shed light. I want a better healthcare industry for everyone, including the people who work in it. We can’t build that future if we don’t understand the present.

We also learned that today’s doctrine of informed consent – in which a doctor chooses a treatment and gets your consent for it – is not at all the same as informed choice, in which all the available options are presented, with all the pros and cons. (What are your priorities? Do you prefer fewer side effects, a better shot at total recovery, less time out of work, lower risk of accidental death? Wouldn’t you want to make those choices, based on the best possible information?)

In my speeches I often assert that patients have a right to know what their options are, and to pursue the ones they want. This is the work of informed, shared decision-making. It requires empowered, engaged, educated patients.

Thanks to the Foundation for Informed Medical Decision Making for their financial support in helping me attend, and to Douglas E. Drane for a generous gift toward travel costs.