Thursday, February 9, 2012

Networked Empowerment of ePatients: What the Population Health Management Community Needs to Know

Are you helping your e-patients?
(The Disease Management Care Blog welcomes the Nursing and Physician Leadership Congress attendees.  By the way, here's the link it mentioned.)

The Disease Management Care Blog got to hear a compelling conference keynote presentation by Dave deBronkart, a.k.a. "e-Patient Dave."    Think of this as an ePost from the eDMCB about the eBusiness implications of ePatients.

By the way, a more suited moniker may be "Remarkable Dave." He's survived Stage IV kidney cancer thanks to a an interleukin based treatment regime that he wouldn't have known about if it weren't for his use of the internet.  Thanks to his laptop and a remarkable degree of determination, he was able to network with similarly "empowered, engaged, equipped and enabled" cancer patients.  Now a multi-year survivor, he's a go-to patient advocate for the Washington DC cognoscenti, is a co-founder of the Society for Participatory Medicine and a tireless advocate for

While the DMCB could never capture the scope of e-Dave's presentation in this blog, there were some insights that may be of use to the disease management and population health management service community:

The "Soup" of Information: As more medical information becomes available on-line, patients, families and friends will be "swimming" in social networks that will yield more insights about possible diagnosis and treatment options than an average physician could ever know about.  This is not about reading on-line content.  This is the two-way sharing of information in community networks of like-minded individuals who spend a lot of time and effort becoming experts.  They ultimately produce value, not consume it.

Population Health Management (PHM) Implications: ePatients with chronic conditions are going to be unlikely to settle for the recommendations in your pre-fab care plans.  Be prepared to accommodate new inputs that will complicate and enrich self-management.  If a e-patient asks about an unknown treatment option out of "left field," the best answer may be "don't know, we'll find out more and get back to you."

Under the Garbage There's Gold: When you consider that as many as 1 in 5 romances start with an on-line dating service that involves hundreds of options and many poor fits before couples find each other, it should be no surprise that much on-line medical information is likewise ill suited to an individual  patient's circumstances.  That's OK, because if patients keep digging, they'll find that key piece of information that they really need.

PHM Implications: An emerging value proposition: being a trusted advisor and catalyzing ePatient information networking and mining.

Wisdom of Crowds on Steroids:  The best source of that information?  Other patients who, unlike many of their physicians, have a lot of time and motivation to do "deep dives" in personally relevant research that would otherwise take years to enter mainstream clinical practice.  They'll also share their personal experiences with each other.

PHM Implications:  Have you thought about not only helping your patients find an on-line community but hosting one?

Vaccine Airheads: Yes, there is a lot of potentially harmful information on the web but much of it is the fault of the medical community.  The spurious link between vaccines and autism, for example, was the result of fraudulent research and faulty peer review.  Compare the "death rate from Googling" to the "To Err Is Human" death rate of 98,000 per year, and you get the picture.

PHM Implications: As you accommodate an on-line community, expect some crazy points of view.  That's the price of doing business.

Jerks Google Also:  If a hateful (maybe a less provocative term would be difficult) patient is using the internet to torpedo a doctor-patient relationship, chances are they'd torpedo the relationship without Googling.  Use of the web is an innocent bystander.

Some other DMCB take aways:

There is ample research on shared decision making (plus a good article here) that shows that when patients get all the information they need, most not only choose wisely, they choose conservatively.  While some may chose the "wrong" option, that's the price of patient empowerment.  From a population-based level most of the curve shifts to the left. The good outweighs the bad.

Once again, we are witnessing the breakdown of "credentials" that separate knowledge-based professionals and self-trained amateurs.  This is a disruptive innovation that represents an important threat to "cognitive" physicians.

Electronic health records that rely on a walled garden to try to capture patients will lose.  Electronic health records that can accommodate the messy world of eDaves will survive.  Electronic records that can enable it will win.

The ePatient movement's benefits outweigh harms, is self-enforcing and impossible to regulate.  That doesn' mean that someone is going to try to do it.

One last closing insight from eDave: If you are reading this, think about what would happen if you developed a serious or life-threatening condition.  You would start searching the internet. 

You are already an ePatient.

Image from an HHS web site

1 comment:

e-Patient Dave said...

Great post, Jaan! A couple of points:

- In my case, my hospital WAS already steering me to IL-2, so my internet research didn't change that. BUT, I've since learned that 3 out of 4 patients with my disease never hear it exists. For them, the ACOR patient community can be life saving.

- Also in my case, it was *my primary* who recommended ACOR. Awesome, eh? Dr. Danny Sands.

- AND, as fate would have it, right after my talk I learned I have a new diagnosis, a basal cell carcinoma (not threatening), so I'm blogging about it - my first diagnosis since I started studying healthcare!