Does the FHIR standard provide what Google Health tried to?
Part 7 of a series on my decade-long hunt (yes, since 2009) for true access to, control of, and use of our health data.
This series started here a week ago with the realization that US healthcare is structured as a huge nest of interlocking businesses, each of which is obligated to protect its money. So to get the best care, we as patients need to be on top of things — starting with our health data. US healthcare often saves lives and achieves its potential, but as the “amenable mortality” paper showed, we absolutely cannot count on it.
Besides, think about it: is there any reason on earth you shouldn’t have the same kind of control over your medical data as you have over your finances with Quicken and Mint?
Some will say “You wouldn’t understand it — you can’t handle the truth.” So?? That’s what they said about finances a lifetime ago — “That’s why you need financial advisors!” Look where that got us: the entire financial system collapsed a decade ago because there was good reason nobody could understand “derivatives” etc. As we learned then, thinking “These experts must know what they’re doing” can be a recipe for disaster. Let us have our data, and let us decide what we want to learn.
Yes, this is a declaration: get out of our way, per yesterday’s post, gimme my DaM data — Data about Me. Bring on the FHIR.
The promise of Google Health, 2009
Ten years ago (see post 3) Google Health and Microsoft HealthVault both held the promise of collecting our data from all different sources, so we could review it and have a comprehensive picture — and perhaps connect it to apps, which might do useful things.
It didn’t happen (both products are dead), partly because every hospital and pharmacy and doctor system would have to write (and maintain) separate software for Google Health, different software for HealthVault, and for anything else.
This is quite like the situation before the internet: it was hard and expensive to get different computers to talk to each other. Heck, for the first few years of the Web, an airline’s website often couldn’t get info from its own reservation system! Today they all connect using HTTP … and new computers are designed from the ground up with the whole idea of sending and receiving data via the internet.
Another massively important factor was that in 2009, hardly anyone had smartphones, so apps were rare, so there were few uses for the data if you did pull it together. (There was potential, but it never reached critical mass, and died on the vine.)
Another important factor was that most hospitals didn’t have (or were barely starting to install) computers to let you get at the data, anyway. (Recall that this all exploded in the newspapers just after the US legislation was passed that provided US$40Bn for EMRs.)
In 2019, all that has changed…
… at least in the US, and increasingly everywhere.
- Nearly all hospitals and doctors’ offices are computerized — some more than others, but nearly all. So there’s lots more data to get at.
- Most of those computers are made by a small number of vendors. Once a vendor such as Epic or Cerner has created a FHIR connector, it doesn’t need to be done over and over.
- Smartphones are everywhere; apps are everywhere. This means there’s infinitely more use for any data we can get out of the computers (and apps), not to mention all the data that we generate with our Fitbits, home blood pressure machines, etc. … data that my doctor generally doesn’t have. (Does yours?) There’s a screaming opportunity to combine professional data with our home personal data, to get a more complete picture.
- FHIR is becoming a sort of “universal connector” to let computers and apps send data back and forth, in the same way the internet allows disparate computers to talk to each other. It wasn’t instantaneous or free — each computer system needed to add an internet connector — but once that was done, everything could talk to everything else. FHIR provides exactly that for health data.
I’m simplifying somewhat — there’s more to sharing health data than just sending the bytes — but it’s a valid analogy.
Two patient stories — then and now — demonstrate the difference, and why it will always be important
Years ago, middle schooler Kate Sheridan had the world’s nastiest case of Lyme disease. She went from star athlete to incapacitated on the couch, from star student to unable to read. Through the years she saw thirty physicians and got fifteen diagnoses, but the docs were stumped. That’s how Lyme can be.
Kate’s mother Kristina, a researcher at MITRE Corp, had been getting all Kate’s data from the providers, but they were only available as PDFs … so many that the printouts were a foot high, each page crammed with numbers — years of test results. Look, and imagine this as holding possible clues to your daughter’s recovery, if only you could see a pattern in the numbers:
At this point Kate had been sick for years. In grim determination while preparing to meet yet another doctor, Kristina gritted her teeth (I imagine) as she sat down and banged all that data into spreadsheets, to take a fresh look.
They realized there were other facts that weren’t even in the doctors’ data — variations in twenty-six symptoms that came and went. They added that data, and created a “total symptom load” graph (see image).
Of course it wasn’t an instant cure — data enables improvement, but it’s not a magic pill. As different treatments were tried, and other discoveries were made, years after this started they had a breakthrough. Daughter Kate is now fully recovered, a grad student at Oxford in the UK.
You can watch a video of their joint keynote at the 2018 HIMSS health IT convention on the MITRE website. It’s inspiring.
Michael Morris, 2018, with FHIR
Fast forward a decade. Mike Morris had a nasty case of Stage IV (metastasized) colorectal cancer, bad enough that he was getting treatment at four different hospitals.
And none of his doctors could see the data from any other hospital.
Being a programmer, Mike was able to use FHIR to pull data from all four hospitals, and (not unlike Kate) create his own graphs of the combined data, so each doctor visit at any hospital would start with Mike showing the doctors his combined data — absolutely the opposite of the traditional “only the doctor knows” visit. (You can watch Mike’s 15 minute speech last September at the FHIR Apps Roundtable in Washington DC, and tonight I’ll update this post with his slides in high resolution.)
Speaking at the FHIR Developer Days in Amsterdam last November, I cited both of these cases as before-and-after examples of what a difference it makes when something like the internet — or FHIR — provides a form of universal connector. It doesn’t do all the work of creating new apps that do a million things; it just makes that work possible. Because to developers, data is fuel. Here’s video of that speech (26 minutes).
Nobody’s saying data alone causes miracles.
Kate’s doing fine, but Mike died anyway last December. But, as I said in my book Let Patients Help, “Nobody can perform to the top of their potential if they don’t have the information.” (Right?? Have you ever been yelled at for not doing something when you didn’t have the facts?)
The company Mike started to work on these data issues, CureSoft, is considering what to do with the pieces completed so far.
This is only the beginning.
We’ll soon be seeing many examples of what we all can do when it’s easy to combine all our data from everywhere, and to keep track of whatever we want, for whatever reason we want, and add it into the mix.
The Sheridan case was transformed, some time after they added in their tracking of Kate’s 26 symptoms. And I myself, in a radically simpler case, am actively involved in tracking mundane but important things like my sleep, my daily step count, my dietary numbers (I only keep track of fat grams), and occasionally blood pressure.
Doing this, I’ve successfully lost 37 pounds and reversed my 2014 pre-diabetes diagnosis. But I never had a single graph or “dashboard” where I could track everything at once, and I want one.
As I continue to age — which happens when you don’t die, so get ready — there will be more things I want to track. Who knows what they’ll be?? Just give me all my DaM data about me.
It’s all about me — not you, vendors. Play nice.
I am irritated beyond words that some vendors refuse to “play well with others,” acting like it’s all about them. (Or about their investors ; the last thing we need is more selfish “threads” in healthcare’s Gordian knot.) For instance, I will never buy another Fitbit (having used five over the years) because they refuse to connect to Apple’s health data network: they say they have their own interface, so Apple can bloody well come join the Fitbit network if they want.
Well, sorry, Fitbit. You may be cute — and you may be really impressed with your stock price, or whatever — but it ain’t about you, so unless you change and play nice, you’re dead to me. (Also, your sleep counter’s inability to detect time zone changes when I take a redeye is just… what?? But that’s for another day.)
Do. Not. Trust. Facebook. Full stop.
Later I’ll have more to say about security of our health data — short version: Do. Not. Trust. Facebook, full stop.
And there will be lots to report next week from the FHIR developer days conference in Seattle.
For now, to answer the headline question:
Does FHIR provide what Google Health tried to?
Yes, that’s the whole idea— at least one important part, on the patient side: to enable everyone (including the patient and family) to contribute to their own health and care, each to the full extent of his or her potential and interest.
The need I felt in 2009 is alive today, because although healthcare continues to save more and more lives, both acute and chronic conditions can be helped with freer flowing data under control of patients, families and clinicians.
Next: the first post from DevDays, Yes, it DOES look like FHIR will enable Gimme My Data
