If you’re, frankly, a visionary who sees that the power structure in medicine is flipping, I urge you to come to La Jolla next month.
MedCity News, one of the best health IT publishers, is hosting its annual “ENGAGE” conference. The mighty Eric Topol is speaking the first morning, and I’m doing the closing keynote on day 2. (I call him mighty because that’s what I think about his vision. So sue me.:-)
Register with promotion code SpeakerReferral and get $500 off, so your cost is only $395. That’s a heck of a good price for this list of speakers – even better than the $300 early-bird discount shown above.
Here’s why this event is unusual:
“Toward a new science of patient engagement”
Last month I launched a complete makeover of this site, including the new tagline: “Toward a new science of patient engagement.” This closing speech will be the formal kickoff of my campaign, making the case for this work to begin.
After more than 500 events in fifteen countries, it’s become clear that the main thing holding back patient engagement is that medicine hasn’t get gotten scientific about it. We need a new science of patient engagement, in which everyone gets their act together to decide how engagement works, what parameters we should be measuring, and how to design hypotheses that can be tested. Until we do that, engagement is nothing but snake oil. We must put an end to this.
Here’s the description of my session …
There are times in history when practitioners in a field sense something new is afoot but the paradigm hasn’t been set. That’s how it is with patient engagement today: we have isolated cases where empowered “e-patients” demonstrate its importance, but sustained value has been elusive.
Such times lead – painfully – to scientific revolutions that explain what didn’t make sense and lead to new fields of research and practice.
… and this is from Eric Topol’s:
Medicine’s Great Inversion
For decades, physicians have told patients what to do and wielded all the power in the relationship. In the past five years, that equation has been turned on its head. With the advent of digital health technologies and the focus on genomics and personalized medicine, patients have squarely placed themselves at the center of the conversation. …
I assert that the reason Topol’s vision in the excellent The Patient Will See You Now is resisted by so many is that our “paradigm of patient” has become obsolete, and must be rethought as part of this new science.
This is important and not trivial.
I (un-humbly) assert that neither business people nor policy people can plan the future right if there’s no agreement on what they’re talking about. But this is not easy stuff, which is why, I imagine, the only other sponsor who has let me talk about this is the Mayo Clinic in 2015, when I was their Visiting Professor in Internal Medicine. (Below is my video from that post, interviewed by Mayo’s Lee Aase.)
The link to register, again, is here, and the promo code to use is EPDave. Hope to see you there!
Lawrence Fagan says
You and I have been debating this topic for some time. In your blog, you said: ” … it’s become clear that the main thing holding back patient engagement is that medicine hasn’t gotten scientific about it.”
Although this isn’t my research area, it appears that there is a great deal of research about what aspects of patient engagement have been shown to have a beneficial effect. A good example is a special issue on this topic in “The Journal of Ambulatory Care Management” from 2012: http://journals.lww.com/ambulatorycaremanagement/toc/2012/04000 (unfortunately and ironically behind a paywall).
There are certainly many more studies to do, and plenty of work to be done to take what has already been studied and convert it into actions to further the cause of patient engagement. But to suggest that this topic has not been formalized at some level is really unfair to the researchers that have pursued this research area.
e-Patient Dave says
A quick first note, Larry: Perhaps I needed to be more clear about “holding back patient engagement”?
I do know (from many many many engagements with healthcare providers) that THEY are not aware of any methodical approach to making patient engagement a reality. This may be Balas’s “17 years” thing – if a paper falls in a (virtual) forest and there’s no one there to hear it, has the world changed? And if the function of healthcare research is not to change the world, what good is it?
I’d be ecstatic to discover there IS a scientific framework for what engagement is, how it creates value, and how to do it with any predictable impact. If you/we can dig it out and organize it all, or define a project to do so, I’ll gladly make it an emphasis of this talk!
So, where is (or what is) the summary framework of how engagement works? I’m not argumentative – I’m eager as can be. Seriously.
Lawrence Fagan says
I agree that more can be done to make sure that this past research is disseminated outside of the research community. One of the roles that you and the patient engagement community can facilitate is locating and translating the research results into concrete steps for both providers and the patient communities. I know that some of your group are working on that task. In the past you’ve suggested that this translation work should be done by “someone else.” But just like taking (obscure) medical knowledge and making it accessible to patients–no one has more incentive than e-patients like you.
PS Your assignment, if you choose to accept it, is to read this special issue and write a one paragraph summary about how much of the content can be adapted towards a summary framework of engagement. :)
Philippa Görason says
If I have understood the difference and newness here it is about introducing patientengagement into the medical profession scientifically. Nursing science already has a lot. The flipping side is to put in the hands of doctors who usually do not do this kind of research. Is that correct? I have heard of the concept health care footprint as a way of studying patientengagement and understanding the patient in healthcare. But I am not sure it really is the same thing you are aiming at.
e-Patient Dave says
Hi, Philippa. The “flipping” is the whole idea of who has control of needed information and is in position to make useful observations. Topol’s book “The Patient Will See You Now” is all about that in various ways, and I of course talk about patients being able to bring value to contribute to their case.
And, related by separate, I’m asserting that the reason medicine can’t move forward in understanding patient engagement is that nobody’s treating it like a science, where definitions are clear and agreed, and the mechanism of action is well understood.
Does that help?