I want to let you know about a couple of important developments. First, I’ve started blogging on another site, Tincture, as well as here; second, there’s important news in the world of health I.T. (or personal health data or whatever you want to call it).
First, the health IT news: there seems to be good stuff happening! An international data transfer standard called FHIR (pronounced “fire”) has been in development for years, and is finally nearing the time when it will (we hope) change the world for those of us who want unfettered access to all our health data.
It’s not very visible to the general public yet, but a Google Image search shows tons of different graphics illustrating different perspectives. Google shows different people different things but here’s what I get:
In March I blogged here about a FHIR course, saying “I’m a fervent evangelist / advocate for FHIR; it’s the first thing I’ve ever seen in the health data world that’s truly focused on getting data to the point where it’s needed.”
I feel so strongly that last November I bought my own plane ticket to go speak at their developer conference (“DevDays”) in Amsterdam, to ask passionately that while the FHIR standard is being developed (to move data between care providers), they leave the door open for patients to easily get copies of everything, if they/we want it. (I’ll post video of that talk tomorrow. If you watch it, you’ll see why this is so important to me: we’re on the verge of a change that could truly be life-altering for some people in trouble. And like many such things, that will filter down to more mundane health activities.)
DevDays US, 2019
Last week I went out to Microsoft headquarters for this year’s US DevDays. (Microsoft is one of the many companies supporting FHIR – FHIR’s not a product of any one vendor. Thank you to MS for covering my travel expenses!) This time I wasn’t a speaker – I was there to hang with the crowd, supporting all the discussions about patient perspectives and tweet up a patient-centered storm. There was one requirement: to waive the conference registration fee, I needed to write three blog posts, one for each day, on FHIR from the patient perspective.
I’ve long wondered about blogging on the high-profile Tincture Health blog, and this seemed like a good time. I realized it’s been ten years (as long-time readers know) since I first tried to gather my health data using the now-dead “Google Health” product, and most readers wouldn’t know why this is such an important issue. So I wrote what turned out to be a seven-part series of posts on Tincture, setting the stage for the three I’d do at DevDays.
The background posts
This project has deep, long roots. I stopped blogging in 2017 when my efforts to understand US healthcare hit a brick wall, realizing there were no more questions to resolve: I blogged that the US system is essentially a malignant tumor. But while researching this series, I was surprised to re-discover that it all started with an almost identical realization in February 2009, just 17 months after my cancer “all clear.” That’s long before I’d become any kind of evangelist.
So, to lay the foundation for the series I updated each of those posts:
- June 1, the 2009 one: A thousand points of fiscal pain”: a patient discovers healthcare’s Gordian knot
- June 2, the 2017 one, with much more data to support my conclusion: American healthcare is a malignant tumor that can’t stop killing its host. This was the post when I realized the system is hopelessly knotted in a financial spiral. It often produces great results (like mine), but there is no longer any guarantee, and it might bankrupt you in the process. Self-defense is called for.
The next four reconstructed my health data train wreck story:
- June 3: A cold day in hell, 2009: why I said yes to Google Health. A critical turning point happened a week after that “Gordian knot” post: a chance encounter made me realize we can improve healthcare if we can manage our data however we want. Here’s that story.
- June 4: An information quality trainwreck: Google Health revealed the mess in my hospital’s data. My hospital sent Google data saying I had all kinds of conditions I didn’t have, and more. What?? This hospital had saved my life! Well, it turns out the computer data at a hospital may not be as well run as the medical practice. That’s a problem.
- June 5: My health data errors exploded in the newspaper. Why? Because America was about to make some stupid decisions, and somehow my health data problem caused a million spotlights to shine on the mistake. I had no idea.
- June 6: A movement is born: “Gimme My Damn Data” Out of all that publicity I was invited to give a speech, and out of that, the famous saying was born.
Finally, tying that 2009 question to the upcoming trip:
At the event
It turned out it wasn’t easy to answer the question – but, importantly, everyone was totally interested in finding out what it will take to deliver what patients really truly need. It won’t be instantaneous and it won’t be the same answer for everyone, but I have to say, this is a bunch of health IT nerds (in the best sense) who are truly interested in doing good dependable work and are not just here to create products for their companies to sell. There’s no “FHIR store” – they’re just doing the long hard work to create a new software standard to make our health data “liquid” so it can flow to where it’s needed. Which may be another medical practice, or your home or apps, etc.
Of course many of the FHIR developers have products. But this work is more like creating HTML, the language that runs the Web. It’s just a standard that enables all the data to flow, so the products can work.
My three posts from the event were delayed as the conference unfolded and our offline discussions did too.
- Post 1, June 11: Yes, it DOES look like FHIR will enable Gimme My Data. Includes the specifics of why I feel that way, and the first of the two Tuesday patient keynotes: Greg Simon of the Biden Cancer Initiative, on “Creating the cancer system you think we already have” :-)
- Post 2, June 13: The #OpenAPS gospel: Dana Lewis sets DevDays on #FHIR. #OpenAPS is the Open Source software Artificial Pancreas System, and it’s an amazing illustration of what power can be enabled when the data is liberated. I’ve only blogged about OpenAPS here once but repeatedly on e-patients.net (especially see the May 2016 posts). I had cited its best-known spokesperson, Dana Lewis, in my November talk in Amsterdam, and this time they had her speak.
- As you’ll see in the sample slides in that post, Dana (and actually her whole movement) has upped her game substantially, and recently published a book about how it works … a book that’s available free or for purchase.
- What these patients (people with Type 1 diabetes) have accomplished to manage their own condition using data is the world’s best illustration that access to data can change lives.
- Final post, June 17: HL7 makes it official: #FHIR exists to serve patient needs. This is where the whole hunt came back around, full circle. After the preparation and first two days of meetings I proposed that there are so many patient-oriented questions … and patients are different … that perhaps the FHIR group should add a patient committee. Within a few hours they had taken action to start creating what they call a Workgroup – a Patient Workgroup – within HL7. And more. The story’s here.
You can see why this has been a thrill. Game on.
As I said in that final post, the vision statement on the About page of HL7 (FHIR’s parent) says it all:
“A world in which everyone can securely access and use the right health data when and where they need it.”
Combine that vision with the ability to make decisions and get in action promptly, and I’m in.
Next: my Amsterdam speech where I made the case for patient access to everything, without exception.