The importance of data-sharing and interoperability were two dominant themes at HIMSS22, with leadership repeatedly emphasizing how the COVID-19 pandemic shined a light on the consequences of siloed information. 

Dr. Donald Rucker, chief strategy officer at 1UpHealth and former National Coordinator for Health Information Technology in the U.S. Department of Health and Human Services, says the ability to represent data uniformly is arguably a bigger win than the ability to transmit it – and he says FHIR will be a key way of doing so.

Rucker spoke to Healthcare IT News in Orlando, Florida, before his HIMSS22 panel about what he sees as the promises of FHIR, how the transformation it enables will affect patients and what next steps look like to achieve its potential. 

Q. What do you see as the main promise of FHIR?

A. I would say there's two of them.

One is, you have a relatively standardized way of representing clinical data – and notice I said "representing," not just interoperating. The ability to represent things uniformly is a bigger win than just, "I can move it from here to there." 

Historically, in healthcare, HL7v2 relied on tab-delimited files. And then there were some other things – there was the X12, for claims data. Obviously, imaging has always had different stuff, too. 

What FHIR says is: "Let's have a uniform representation for all of these things, using modern technologies." 

So, one part is the uniformity of it. 

What FHIR does is it leverages something called JavaScript Object Notation  [JSON], which is a modern way of representing data, all data. So, the apps on your smartphone, most of those, right, every app on your smartphone, is hooked up to a server. That's how they make money. That back and forth is JSON, more likely than not. 

And so, that back and forth means the second part of why FHIR is important: You can now use the entire software stack that has been built up for the app economy. All the programmers, all the kids in garages. All of the software stacks, the infrastructure – all of that is now in healthcare for the first time, using the broader software.

I mean, healthcare has always been this sort of world unto itself. And this is a huge step to making healthcare computing – a.k.a. computing for patients – much more like their consumer experience. 

So, it's those two things that make FHIR utterly powerful. 

And, you know, the interesting stuff when we did the rule-writing was because Congress said there should be APIs without special effort. In other words, non-proprietary APIs. It was really easy. There was no other plausible standard. I didn't have to, you know, sit there, thinking, "Should we do this? Should we do that?" There is only one plausible contender here. It's FHIR. Having a choice of one makes choosing easy. 

Q. How will this complement the information-sharing enabled by TEFCA?

A. TEFCA [Trusted Exchange Framework and Common Agreement] is a way for incumbent EHR vendors to connect to providers. That's sort of its first and foremost purpose of design and construction. It's a very different world to think about how apps and FHIR and consumers connect. Maybe it'll evolve into that. But it's not in the current spec.

Q. So, how will these advancements in FHIR affect patients?

A. The fundamental transformation that was the point of the Cures Act, and certainly what our goal was at ONC, is to have patients in control of their data and let patients decide what they want. Historically, it was through a patient portal. 

And yeah, with a patient portal, I can look at my data. But that's not going to help me shop for care; that's not going to let me move care to another provider. That's not going to let me, you know, look at my illness with some app that helps me with my sleep, or with true fitness informed by my medical information as opposed to just tracking steps.

So, the true power with these APIs and FHIR will allow patients to get ahold of data, and then an app economy will build up, I believe. If you're a patient, if you're sick, but still able to function, then you're gonna be more interested in interacting with an app the more time you spend on your illness.

All I'm looking at is what's going on in the 80% of the economy that's not healthcare. If consumers had the choice they have in that 80% of the economy, in the 20% that's healthcare, would they choose something radically different? No, I doubt it. 

This is not like extreme clairvoyance.

Q. What are we looking at in terms of next steps toward achieving those promises of FHIR?

A. FHIR is, to be specific, the healthcare version of JSON. So, a lot of the entrepreneurial world will  jump into this. I mean, there's billions of dollars of venture money going into these things – not millions, not hundreds of millions, billions. All those things take a while to play out. 

And then I think the government has to be very careful about trying to provide some bandwidth, which, you know, the Cures Act is a first step on. Information-blocking enforcement will be another step to actually let patients have that data.

Then to the extent we rethink the payment system, that'll be an absolute flood. I used to make the point when I was giving the ONC rule-writing roadshow: If there's anything Americans love to do, it's shop. That will happen in healthcare, as people get more information about what they're getting. All of this is going to happen. We just know it from our consumer lives. It's just about breaking down the barriers.

Things like price transparency are part of the trend. It's not just FHIR. It's not just apps. I think these things fit together. 

The other thing to talk about, at least briefly, is the rule actually has two FHIR APIs in it.

Bulk FHIR is under HIPAA's treatment payment operations. That's a totally different beast – that's a signed contract between payers and providers. But for the first time ever, it will give computational accountability to what is done in healthcare. 

Today, there's no computational accountability to healthcare performance in any kind of real way. You have the teeny-weeny direction of value-based care with quality measures. But you don't have any computational way of saying, in general, is this provider better than that provider, in an electronic way. I mean, you have word of mouth, but there's no computational way. 

Bulk FHIR will allow people who have the HIPAA treatment payment operations – so payers, providers – to actually start thinking about accountability from a population point of view. 

Markets are moved by individuals. But if our care is blocked by payers, we need to give them modern tools, too, and this does that. So, the FHIR APIs are doubly transformative.

Q. What role does 1Up play in all this?

A. What 1Up does is say, "How are you going to use FHIR in this modern world to do stuff? The API exists. What are you going to do on the other side of the API?"

So 1Up is a platform that says, "In this world, app vendors and providers and payers are wanting to do massive computing at scale, using FHIR." All claims are not in FHIR, and there's a lot of clinical data that's not in FHIR. So, we have a platform to get all of this into FHIR, and to do it at vast scale, so we can ingest and generate a quarter-million FHIR resources a minute. That's real volume. 

Then you want to do something with it, right. In this modern world, you want it to be really plastic, and flexible about what you do. We represent it in multiple different ways. So, you can compute about it pretty much in any way you want. And you can compute about it either for analytics, or to put it to an API. 

You want to build an app in this world; you need to be able to rearrange all of these things in real time. So, we represent the entire world as atomic FHIR resources, which is unique. Then, we represent it in NoSQL, in columnar stores, in relational stores – so, we have multiple ways to get at it. That's sort of what you also need to actually make it work.

Finally, we do field-level security on every data field because we figured out a very clever way of indexing privacy: We put in every resource with its own privacy stack. 

One of the classic privacy examples is HIV status. Well, what does that actually mean? That field may be protected, but the field that has the fact that you're on an anti-retroviral medication, or that you get CD4 tests is not protected. You're only getting serial CD4 tests if you have HIV. You can't protect all those other fields because then, you have to totally redesign your database, and current databases aren't even designed to do that. 

1Up gives each party different rights and responsibilities and authorizations to the data. 

Kat Jercich is senior editor of Healthcare IT News.
Twitter: @kjercich
Email: kjercich@himss.org
Healthcare IT News is a HIMSS Media publication.