By SUSANNAH FOX
This piece is part of the series “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” which explores whether it’s possible to advance interoperability while maintaining privacy. Check out other pieces in the series here.
A question I hear quite often, sometimes whispered, is: Why should anyone care about health data interoperability? It sounds pretty technical and boring.
If I’m talking with a “civilian” (in my world, someone not obsessed with health care and technology) I point out that interoperable health data can help people care for themselves and their families by streamlining simple things (like tracking medication lists and vaccination records) and more complicated things (like pulling all your records into one place when seeking a second opinion or coordinating care for a chronic condition). Open, interoperable data also helps people make better pocketbook decisions when they can comparison-shop for health plans, care centers, and drugs.
Sometimes business leaders push back on the health data rights movement, asking, sometimes aggressively: Who really wants their data? And what would they do with it if they got it? Nobody they know, including their current customers, is clamoring for interoperable health data.
Forgive me if I smile, out of pure nostalgia. These leaders are taking me back to the 1990s when I was building data-driven websites and myopic executives were deriding the Web as a zero-billion dollar business.
Other leaders, though, had a vision of what was possible, even on dial-up. They did not denigrate the clunkiness of the current tools or point out that nobody was asking for the service they were creating.
For example, Amazon started selling books online in 1995 when only around 14% of U.S. adults had access to the internet. Jeff Bezos created a platform business that leverages data to deliver products. Our opportunity is to create platform businesses that leverage data to deliver health. Don’t let the failure of your imagination limit your ability to serve your customers.
Here’s another way to think about our current situation:
My friend Hugo Campos is originally from Brazil and taught me a lovely phrase in Portuguese about someone who holds all the cards, who seems to have all that they need to create change: “Está com a faca e o queijo na mão.” It means: He holds the cheese and the knife. This person has what they need to execute their vision. You want to be that person.
I came up with this illustration for how this pertains to health data:
Right now you might be in the lower right quadrant. Let’s call that the Data Pantry. You have lots of data but you’re not yet sharing it, nor are you leveraging it well. You just have the cheese. No knife.
Some of you might be entrepreneurs or innovators (and of course this includes patients and caregivers) who can’t wait to get your hands on these data flows. You have great ideas and maybe even a prototype of a tool that will make a difference in people’s lives, if only you could partner with someone who has data. You just have a knife. No cheese.
Organizations who are putting it all together, who are sharing data, partnering to bring in more data, partnering with patients and entrepreneurs who have ideas – they are the Data Elite. They have the cheese and the knife.
But what about the lower left quadrant? They don’t have a lot of aggregate data and they don’t know why they should care. Guess what? That’s the biggest group of all and we love them. They are the customers. To extend the cheese metaphor, they will consume the sandwiches we make and ask where we’ve been all their lives. They will start managing their diabetes better, they will get their kids’ immunization records squared away faster for school and for summer camp, they will be able to share their mom’s health record with a new specialist to get a second opinion.
The elephant in the room is that most people don’t want to engage in their health, much less with their health data. Highly motivated patients and caregivers are the tip of the spear, the pioneers who will push for access and help create the tools that the rest of the population will gratefully use if they ever need them.
Take Hugo for example. He lives with a heart condition that requires him to have an implantable cardioverter defibrillator (ICD). He knows that the data generated by the device could help him manage his condition, but he doesn’t have access to it. Medtronic is hoarding the cheese. But Hugo has been able to jailbreak his device, get access, and show his doctor that, for example, Scotch whisky makes his heart flutter, so he’s had to cut it out of his life sadly. Here’s how this pertains to the broader health data conversation: Medtronic’s hoarding of data hurts not only Hugo, it hurts his family, his employer, AND his health insurance company, who want to keep Hugo well.
We should all be working toward freeing the data and letting people decide whether to engage with it, building the infrastructure and tools that allows someone to wake up one day (maybe because of a life-changing diagnosis) and say, “Yes, I’m ready. Now, how do I get my data?”
You want to be there for them in their time of need. That’s our opportunity and that’s our mission. And interoperable data, while it sounds very technical, is actually very human.
To learn more about Hugo and his fight for data access, please see:
- Hugo Campos has waged a decade-long battle for access to his heart implant (The Economist; Sept 12, 2019)
- My Device, My Body, My Data (Quantified Self, Feb. 4, 2015)
If you are a patient/citizen/consumer working on applications of health data of any kind, check out this opportunity for an all-expenses paid trip to the FHIR “Dev Days” event in Amsterdam.
Susannah Fox, former CTO of the US Department of HHS, helps people navigate health and technology, providing strategic advice related to research, health data, technology, and innovation. This post originally appeared on her blog here.