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.
Featured image: “Medical records closes at 5:00pm on Friday” by Regina Holliday.
Thank you so, so much for this post (and of course for spreading the word about the FHIR DevDays invitation). You have articulately so warmly and clearly the importance of all this.
While you’re at Medicine X, I’m immersed this week at the HL7 annual meeting in Atlanta. (The 35 year old HL7 standards organization is the home of the FHIR standard, which is about 6 years old and just beginning to “come out.”) I hope our hashtags will interweave.
I want to spotlight the wonderful segmentation graphic you made out of the “knife and cheese” metaphor. I want to propose, too, that the same 2×2 applies to the data-and-tools ecosystem: in my very first speech to government people in 2010 (AHRQ’s IT contractors), I said “To innovators, data is fuel. No engine can produce any value without fuel.” I said it because some fools 🙂 were saying skeptically, “No patient data tool has ever done anything useful.” (Ergo, why try?)
It’s like saying “No woman has ever been president, so why bother even letting them be candidates?” Boneheaded backwardness; complete lack of vision. We need better than that, in our leadership.
Yet even in the last couple of years my hospital’s CIO blogged “There’s no reason to give patients their data, because even if they had it, there’s nothing they could do with it.” I call a chicken/egg error – no CIO should be guilty of such a classic mistake!
“Interop,” as we call it, is essential to the future of care. Truly excellent talks and technical sessions are happening here. This weekend in the FHIR “Connectathon” a hundred people developed new code, on the fly, to make new things happen, quickly, using FHIR. One app, for instance, took a new prescription and pulled together the patient’s insurance authorization and out of pocket cost, blending it with the price of generics AND the alternatives offered by the GoodRx discount direct-to-consumer tool. I’ll be blogging about that.
Good things are starting to happen.
Hooray! And yes. And let’s go faster toward the future!
Thank you.
A quieter question is sometimes asked after I get through answering “Why should anyone care about interoperability?” That question is “What does this mean for me?” And that’s sometimes followed by “Do I have to do anything? And if so, when?”
I have deep empathy for people who have spent their whole lives doing other things than geeking out on techie acronyms like FHIR, API, etc. They are being forced to learn about things they didn’t think they had to pay attention to. We are all in health IT now, people, like it or not.
So here’s the start of answers to those questions and I’d like to invite other people to chime in.
If you are a consumer/patient/citizen, you don’t necessarily have to do anything right now.
If these conversations excite your imagination, you could start thinking about what problem-solving you may want to do in the future using data — or even start designing your own app, if you’ve got those skills and interests.
If you’re more of the watchful waiting type when it comes to new tech, you can be pretty sure that when your clinician or health insurance company or pharmacy has an awesome app to recommend, they will. They will invest in marketing and outreach to the same degree they are investing in building those APIs and applications now.
If you are a Data Holder and you have not yet heard about (or don’t yet fully understand) the new rule mandating interoperability, now is the time to get up to speed (and fast). This is happening. There’s no more hiding from it.
The current National Coordinator for Health IT, Don Rucker, has an excellent blog post about the rule. Once you’ve absorbed that overview, start digging into the other resources on HealthIT.gov about the proposed rule.
If you’d like to dig further into the technical aspects of the rule’s implementation, I’m partial to the SMART Team’s take.
Now, what other resources can we gather for our civilian friends and colleagues? Please share in the comments.
State public health departments collect immunization data. Lots of these departments are actually covered entities under HIPAA. Which means you should be able to get a complete immunization record from them. Jim Daniels in the chief technology officers office at HHS is collecting information information from the public via webinars about what it should look like for consumer who wants to use an app to get their kids immunization records from a state public health office. I will dig up that link and post again.
Thanks! Here’s the link: Expanding consumer access to personal and family immunization records
Here at the HL7 working group meeting, I’ve met a lot of different people who’ve come here from varied backgrounds, all involving rolling out health IT and working with the patients and clinicians on the front lines of care. Unlike the EMR vendors who sell the systems, and the C-level people who buy them, these are all front-line “worker bees.”
Several have mentioned seeing “civilians” have their moment of awakening when they discover mistakes in their charts (or their kids’ or elders’). This simultaneous wakens them to (a) the possibility that providers ain’t perfect, and, perhaps more importantly, (b) the realization that they might be useful even without medical training.
We remember Regina Holliday, ten years ago during her husband’s horrible final month, finally getting his chart and discovering that a walker had been ordered (because of his painful bone mets) and never delivered; that his bladder was severely distended and should be catheterized, which had never been done.
A few years later at the Connected Health conference I met the behaviorist BJ Fogg, who suggested that to bootstrap our movement perhaps I should start a project called “A Million Errors Fixed,” in which we take the citizen’s hospital name and give them the contact info to get their chart, and the info for getting mistakes fixed.
Today the access would be far easier due to computerization, though getting it fixed is still challenging. But maybe the time has come to look at the idea again!