Toward a New Science of Patient Engagement
A great, great man has passed away – a man I quote in half my speeches. I was privileged to know him enough to feel grateful about it, and especially grateful to have been able to visit him a few times in his final weeks. It’s Warner Slack, the one who famously said in the 1970s that patients are the most underutilized resource in healthcare.
There’s so much to say about him, but I’ll mostly let others speak, partly because it’s hard to know what to add. Here are a few things.
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No wonder people get tired of fighting to improve social attitudes. This one is so obvious, yet we keep getting asked the same outdated questions. What amazes me, though, is that this time the skeptical scoffing comes from uninformed innovators, not old-timers! Makes me want to bang my head on the desk.
Last week I posted here about my talk at the SIIM conference in DC, including the rousing favorable response from the audience on Twitter. It appears the popularity has aroused scoffing skepticism AGAIN: “What would patients even DO with their images?? They don’t know how to read them…”
Notice how that thinking presumes the only thing a patient could do with the image is try to play doctor! So I blogged a bunch of the stories patients told me on Facebook in response to my request. Have a look at the post and the fascinating range of stories people shared. How wrong the skeptics are, when they think a patient is trying to step into the doctor’s shoes. Some do in fact become good enough to spot things like a missed tumor(!) – but in most cases the patient does something that adds to what doctors normally do. Isn’t that interesting? Go read.
After eight years of speeches at conferences, I’ve observed that while medicine achieves incredible miracles that were impossible a generation ago – like saving my sorry life – it still falls short of potential more often than necessary. Lots of people write big fat books about it, but some problems don’t change, which raises the question: what can we tell consumers of the system, patients, that will help them get the best care when they’re in need?
So that’s a new series of speeches I’ll be doing, not just at big conferences but at local meetings in cities and towns, hospitals and community centers. These talks aren’t designed to change the healthcare system much; to the contrary, they’ll empower ordinary people who use the system to help the system do its best.
Again this year I was thrilled to be invited by Philips to participate in their Future Health Index project. This is among the most visionary annual healthcare overviews in the world. The full report – a 100 page PDF – is available free here.
Each year they’ve also asked me to submit a post for the project’s blog. Here’s my submission this year, touching on why oncology is ahead of most specialties in this area: the field decided years ago to align for patient benefit!
Let’s all do everything we can to help healthcare achieve its potential! Sharing information is part of that.
Decade after decade, innovations change the future of care. Microbes, anesthesia, surgery, transfusions, public health, radiology, penicillin, genomics … each development produced a quantum shift in what clinicians can achieve and in patients’ lives.
I wrote an article for the Future Health Index last year, Could data make you live longer?, which lists six different ways I as a patient can be empowered by better data flow. Similarly, it turns out one of medicine’s next great frontiers is not biological but technological: the ability for clinicians to share relevant patient data with others.
In this innovation, oncology is ahead of other specialties: the 2016 Future Health Index report found that 71% of oncologists across 13 countries share patient data electronically, while only 63% of other clinicians do.
Why? What can we learn from this?
A big factor is that oncology as a profession decided nearly a decade ago that electronic data sharing is core to their work, and spoke up about what they need.
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Third in a series of retrospective posts, reviewing the ten years since my cancer and how my shifting perspective has altered what I’ll be doing from now on. I’m generally doing one post per year, but so much happened in 2009 that it’ll take several.
By the way, I added new items on my 2008 entry – things that later became important: an award I got for using data in my day job, and meeting @TedEytan.
At the annual “friends of Tom” retreat (Doc Tom’s friends) that I mentioned last time, that gang of crazies decided the time had come to become a medical society. In addition to deciding on a mission (patient-clinician partnerships) they talked about officers, and said “It won’t do to have this society run only by doctors, of course.” I think it was Gilles Frydman (founder of ACOR, where my patient community lived) who said it had to be a doctor-patient team. They looked around and pointed to the only pair in the room – Danny and me – and said we should be co-chairs.
I’m a health data nudist: I don’t care who sees my “privates,” if doing so furthers the cause. And the time has come to push the issue, because my hospital is stonewalling, and that is just so not okay: as comments on my previous post show, this truly impedes care. And that must stop.
To end any mysteries about the much-touted PatientSite portal, in all its 1990s glory, I’ve decided to publish a complete 15-minute walk-through of everything in my chart, when I’m logged in PatientSite at Beth Israel Deaconess, the hospital that magnificently saved my life ten years ago.