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.
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This is so evergreen and SO ripe now that FHIR is the law of the land. I’m so glad this came to light today on LinkedIn!
Sorry to be late to the discussion, and thank you for the post. Perhaps coordinating efforts with we ‘customers’ (patient advocates), who understand the importance of our data, would help hospital CEOs (& other decision makers) realize how tenuous their logger-jams are! That means data scientists/entrepreneurs also need to listen to our needs and insights, treating us as partners instead of data repositories… Ready to strategize – anyone game?
That was nice.
Hello Susannah, Loved the article, very well written. According to me all we can actually rely on is data health Interoperability cause everything is computers these days. The pain management doctors in rockland county ny are the ones I have been a patient of these years and they all are using these interoperabilities, which seems quite useful in many ways. The data can be inappropriate but I believe it depends on the manufacturers of these devices. The doctors are just users but it should be a must for them to be accurate about the data being provided.
Thank you! This is EXACTLY the sort of experience that is, I think, invisible to many health care leaders. We could probably construct another 2×2 to describe CEO types: Recognize they have a problem vs. Not x Want to hear from entrepreneurs vs. Not. For those hospital CEOs in the “Recognize + Want” quadrant, this phrase should give them a chill: “and now we avoid the hospital market.” How might we find those CEOs and help them to create incubators and prize competitions that truly invite entrepreneurs, clinicians, patients, caregivers, researchers (etc) to the table? How might we help all CEOs see that they’re going to miss out if they don’t move toward the “Recognize + Want” quadrant?
@George – This is exactly my experience and, as you say, there’s nothing driving the hospitals to change. The large ones can effectively improve their market position by leveraging the patient data cheese that they control to become a “platform”. The smaller hospitals don’t have enough data to matter from a machine learning or platform perspective and they will implement data use policies that simply maximize billing regardless of the impact on patient care just to stay afloat.
As an entrepreneur (or a physician) would you benefit from the emergence of one or three major platforms like Mayo + Google?
What do you think of the dispute between Surescripts and Amazon/PillPack where the pharmacy is denied access to patient history in Surescripts even though PillPack have the consent of the patient?
Hi Susannah,
Great article and I loved your illustration. I am in the orange box on the top left – Entrepreneurs and recently participated in an Incubator competition.
We had a mentoring session with the IT group of a large hospital system. The docs heaped praise on our app and were eager to try it out. At the end of that IT session we were left with the very clear impression that there was NOTHING we could do to pass the hurdles of access to their data. We could FAX documents into their system – pulling and pushing data was too much of a security risk.
The issues notwithstanding – the message was clear – go away.
Security of PHI is a shared concern among hospitals, doctors, patients, and entrepreneurs – but making access impossible also facilitates a hidden agenda of control coupled to NO CHANGES.
This was my fourth incubator and in each one we had very similar experiences with large health care systems and their EPIC ilk EMRs – and now we avoid the hospital market – even when we get missives from interested providers.
I believe we are not alone among those in the same orange box. I posit that you will see little to no significant innovation at hospital systems for the next decade because of these barriers.
Best regards,
George Krucik, MD MBA
Hi Suzannah. I too am a member of the Hugo Campos fan club. The cheese and knife analogy is very apt. In order for consumers to benefit, they need to have market power through meaningful choice. Otherwise, all we have is a a few “platforms” looking to put together Big finance and reputation to corner the market on cheeses and knives.
I wrote about this recently as Barbarians at the Gate https://thehealthcareblog.com/blog/2019/09/05/barbarians-at-the-gate/
CARIN Alliance is a self-serving consortium of the knives (would-be app developers) and the would-be knife and cheese platforms (Apple, Microsoft, Microsoft, Amazon, Google, IBM, Salesforce and Oracle). The cheeses seem to be keeping a low profile in CARIN for now although Mayo just announced their deal with Google at Health 2.0 Could there be a better combination of reputation + money to create the “platform” that Mayo’s CIO said they hope to become?
Patient Privacy Rights is calling for a “separation of concerns” where the entities that hold the cheese do not get to also decide on what knives can be used to make delicious sandwiches. This separation of concerns will give communities of patients, hundreds of them around the world, a chance to compete for patient trust and patient data without any dominant platforms extracting monopoly rents in the middle.
I commend THCB for this open discussion of the Goldilocks Dilemma. It’s time for CARIN Alliance to join this conversation. Apple, Microsoft, Amazon, and Google, as consumer brands, where are you?