Health for life

Are you helping your e-patients?

(The Disease Management Care Blog welcomes the Nursing and Physician Leadership Congress attendees.  By the way, heres 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." Hes survived Stage IV kidney cancer thanks to a an interleukin based treatment regime that he wouldnt have known about if it werent 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, hes 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 acor.org.

While the DMCB could never capture the scope of e-Daves 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 "dont know, well find out more and get back to you."

Under the Garbage Theres 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  patients circumstances.  Thats OK, because if patients keep digging, theyll 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.  Theyll 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.  Thats 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 theyd 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, thats 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 movements 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

As readers may recall, the Disease Management Care Blog is a big fan of shared decision making (SDM). Using unbiased, state-of-the-art and interactive media that presents a set of treatment options, patients with the help of their doctors are surprisingly able to input their values, make trade-offs and come up with the best choice. Research suggests that patients tend, in aggregate, to be both reasonable and conservative.

The DMCB is also a fan of the ePatient movement.  Based social media, this is the networked and two-way sharing of medical information in a virtual community of like-minded patients that also facilitates informed patient decision-making. Compared to SDM, ePatients have been less well studied, but there is some good research that suggests that these on-line communities are remarkably disciplined and accurate. In fact, advocates argue that ePatient communities, compared to physicians, are better able to alert its members about the latest medical updates.

Which makes the DMCB wonder if the ePatient movement represents a classic disruptive innovation that is threatening the SDM business model.  Commercial SDM typically is made up of video content (much like a DVD) that is developed by credentialed experts and has to be updated periodically. Contrast that approach with the ePatient community (on-line, on demand whenever you want it) that harnesses the wisdom of crowds and is so organic, it really never stops being updated.

Think music CDs vs. iTunes. Or DVD movies vs. on-line streaming.

But the most important distinction? The former is being sold by physicians or content developers, while the latter is being given away.

The DMCB speculates:

The shortage of primary care services, increased cost sharing, spreading consumerism, the explosion of medical information, distrust of authority, ease of use for social media, less concern about privacy, the rise of self-educated experts and a curious immunity from actually having to make money all make the DMCB think that the ePatient movement is here to stay.  Its value will trump the inevitable anecdotes of waylaid web users, e-mistakes and death by internet.

In order to stay relevant, commercial shared decision support tools will begin to direct users to medical e-communities. Physicians will "outsource" their own SDM to online ePatients. This will give IBMs Watson a run for its money. Architects of clinical guidelines, point of care decision support, EHR portals and health information exchanges will successfully ignore the ePatient movement - for now.

On-line bulletin boards will be the first stop for any new symptom and to second guess physician advice. The doctor-patient relationship will turn into a menage a trois.

"eApps" will appear for the persons with diabetes, mothers of leukemics and the children of persons with Alzheimers.

Health insurer perred provider networks will have one more reason to die off.

e-Communities will add value in helping its ePatients figure out how to get insurers to cover services that would otherwise be denied.

Some mainstream health organizations will host ePatient communities.  Authentic and trustworthy ones will learn from them. None will successfully commercialize them.

Researchers will tap into e-communities to recruit patients for research. The pooling of users data for observational research studies will grow.

Unfortunately, this will exacerbate the medical digital divide for persons without reliable access to the internet.