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.
Forming the Society for Participatory Medicine
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.
So, as I say in some speeches, I went from being almost dead in 2007 to co-chair of a medical society in 2009, which some people describe as “the jiujitsu approach to cancer” – you use the energy of the attacker to propel yourself forward.
Now it’s time to step back to the start of the month, which began the sequence of events that led to the front page of the Boston Globe.
February 2, Palm Springs: “Critical” and a health data epiphany
Last time I said the pioneering Peter Waegemann had invited Dr. Sands and me to present my case again on February 2 at his 25th annual “TEPR” conference (Toward the Electronic Patient Record). (Yes, 25th – he’d been running this event since the 1980s.) This was the first time I’d ever had someone buy me a plane ticket to Palm Springs – you bet I went! (Plus, to go on a trip with Danny Sands?? Are you kiddin’ me??)
Two important things happened in Palm Springs, aside from the speech:
- Reading Critical: While there I was reading the book Critical by Tom Daschle. He was the newly-elected Obama’s nominee for secretary of Health & Human Services (HHS). Recounting the twentieth century’s evolution of healthcare and insurance in America, Critical was the first thing I read that talked about politics in healthcare: every time anyone since FDR had tried to accomplish any kind of health reform, it got blocked by one power bloc or another. Sometimes it was the AMA, sometimes insurance, sometimes employers.
- Note: this power play has been going on since long before healthcare was a massive part of the US economy. (The book goes back to 1940; the graph here, through 2010, shows that even in 1960 it was only 5% of GDP. Today it’s close to 20%.)
- It’s important to note this because today one major factor blocking change is the enormous size of the healthcare economy, but back then people already jostled for control, when far less money was in play.
- Incidentally, the day after our speech (Feb 3) Daschle withdrew his nomination because of controversy about his advocacy work, some of which was paid for by industry.
- I had an epiphany about health data, and decided I would take advantage of my hospital’s offer to send my health data into Google Health.
- Mind you, this was a complete reversal of what I’d said a year earlier, when, in What’s next, Google Health??, I’d concluded with this: “GOOG’s stock is doing great and I love their free tools, but there’s no way in hell I’m giving them sensitive personal data, regardless of what their policy says.”
The reversal was caused by the convergence of two things: the award I’d gotten in November for my data work in my day job, plus a complete coincidence that happened at the Google Health exhibit.
The epiphany: to allow patient-centered innovation,
our data must be free to move.
The day after my speech, I happened to run into the Google Health booth in TEPR’s exhibit area. With a frankly cynical tone, I asked the demonstrator “So if I give you guys my data, what can I do that I can’t do already?”
Much to my surprise, the demonstrator happened to pull up a solution to a real problem I’d had during my treatment. As I blogged back then:
When I was discharged from the hospital after my first week of Interleukin, I was given a complex medication schedule grid – which had to be created with pencil and ruler by a highly trained nurse.
Since I worked in the Salesforce.com world, where useful graphs are constantly created by innovators who read your database, I was surprised that she’d done this by hand, and asked why the system didn’t do it. Pivotally, she replied: “Our computers can’t do things like this.” What?? Continuing:
This was not a sensible use of her time. So, being a software thinker, I spec’d out a “Med Minder” program that would take prescription instructions (“take this one 3x/day, take this one with meals,” etc) and spit out a nicely printed daily schedule. I had additional ideas: “mash it up” with a database of pill images so you can see what pills to take; “mash it up” with a database of different Walgreen’s pillboxes so you can see what to put in each cell of your particular pillbox.
I talked to a few people about it and hadn’t found anyone interested in the idea.
But at the Google Health booth at a recent trade show, look what I saw: ePillBox.info takes your prescription info from Google Health and shows you how to fill your pillbox!
It was an epiphany: put my data in there, and I get access to mash-ups. All kinds of potential tools that I know could be useful become possible.
The healthcare establishment isn’t getting around to doing them, but ordinary data geeks are.
(Emphasis added for this 2017 re-post.) I concluded:
My goal is to help create a new world where healthcare is enormously more efficient than it is today, and where important new developments happen enormously faster than they do today.
And with that in mind, the advantages of uploading our data far outweigh the risks.
So I decided to “publish” my data into Google Health, to do my small part to seed innovation.
Little did I know, as I know today, that although innovators want to innovate, lots of people who hold our data don’t want us to be able to move it around. They want us locked in so we can’t go to other doctors (or use other software), and they frankly don’t care if that holds back progress – and my hospital is one of them. This was an immense disappointment to me. (They’re not unique in this, not at all – but it’s still a big disappointment. Great innovative doctors, in a hospital with business policies that suppress patient power.)
Eight years later I can’t emphasize enough how oppressive this is, how much it obstructs care improvement. A year later (2010) in a speech to AHRQ’s I.T. contractors I said (video), “To innovators, data is fuel.” It’s an apt metaphor: the most powerful machine in the world can’t get anywhere without fuel, and the same is true about software. Quicken and Mint.com couldn’t help organize your finances if they couldn’t get at your data; a travel site like Tripit couldn’t organize your air and hotel plans; etc. Increasing value is all about access to my data.
So, back in 2009, although I still didn’t trust Google, I decided I was more interested in seeding innovation by sending my medical data to Google Health, through my hospital’s interface. So I went home, and a few weeks later I went to my patient portal at Beth Israel Deaconess, and clicked the button to send my data to Google.
What came across was utter garbage. Figuring out why that happened caused an earthquake.
Next: an “information trainwreck” on the front page of the Globe