This transcription is provided by artificial intelligence. We believe in technology but understand that even the smartest robots can sometimes get speech recognition wrong.

 Welcome to this Week in Health, it influence where we discuss the influence of technology on health with the people who are making it happen. My name is Bill Russell, recovering healthcare, CIO, and creator of this week in Health. it a set of podcasts and videos dedicated to developing the next generation of health IT leaders.

This podcast is sponsored by health lyrics. Professional athletes have coaches for every aspect of their life to improve performance. Yet many CIOs and health executives choose to go it alone. Technology has taken center stage for healthcare. Get a coach in your corner. Visit health lyrics.com to schedule your free consultation.

Two new services on the website wanna make you aware of this week. Health Insights is for individuals looking to propel your health IT career forward, two emails a week designed to give you insights that set you apart. This week Health Staff Meeting is for teams, really for managers, looking to introduce your teams to new thinking from industry leaders to get the conversation started on the right foot.

It's gonna be a discussion on the opportunities, challenges, and promise of leveraging multi-cloud environments for healthcare. If you're there, please stop by. I'd love to see you. We caught up with Dr. Don Rucker, the National Coordinator for Health Information Technology for ONC. At the Health 2.0 conference and we discussed what it's gonna take to get data in the hands of the patients.

Have a listen. Hope you enjoy. . Another session from Health 2.0. I'm with Don Rucker. Dr. Don Rucker, national coordinator for health it for HHS. Welcome. Thank you. Thank you both. Yeah. So you're a physician, technologist. Give us a little, little of your background. Okay. Well, um, I started as a doc. I was actually in medical school when I realized American healthcare is sort of a, uh, odd bit of a, uh, highly ineffective activity.

Many ways just sitting as a first year medical student seeing, uh, the goings on. So then I, uh, got interested in some things like decision analysis, and I realized ultimately one of the things that was needed was actually more data. Um, and, uh, the only way to really do that was with computers. And so I did a very unusual career move, which is to go from

Uh, residency to grad school and computer science, um, and learn computing, and then have been involved in healthcare it ever since. Wow. So what was the state 30, 40 years ago? I mean, you, you probably couldn't do. Basic stuff. Well, um, the state was paper charts, right? I mean, simply, um, you know, if you were, uh, I've spent most of my career as an ER doc.

Uh, there were just paper charts on a clipboard. Um, if you were in the hospital, um, you had a binder from the hospitalization or a clipboard. Um, labs were, um, pasted with a like little sticky, um, third of a. Page pieces of paper into the lab section of a paper chart. Shingled like, uh, shingles on the side of a house, right?

Um, you could actually tell a fair amount about a patient's illness 'cause each lab type had a different color code on the edge of the paper. So you could look at a paper chart sideways and have a pretty good idea given the number of tests available, what the patient's problem was. From literally looking at the chart sideways.

Wow. So in some ways we've come a long way. Yeah. In some ways we haven't. Um, and there's an awful lot of things coming out of, of, uh, your side of the, the government around data sharing. Right. So let's, let's just start with the basic question. Why is data sharing so important the, the real . Key about data sharing.

I mean, there are a lot of things about operational efficiency. The real key is can we put the medical record, the medical chart, and the medical care in the patient's hands? Right? And that was sort of a rhetorical question at best, 10, 15 years ago, we had no browsers or, you know, no effective browsers. Um, we certainly didn't have smart phones.

Now we actually, for the first time ever in the history of civilization, not that they probably had a lot of medical records a hundred years ago, um, but now for the first time we have a technology, um, both to generate the electronic record and to get it to the patient. So the real . Um, power of these, what are called APIs, application programming interfaces, is to get the data to the patients so the patients can shop on it, control it, reflect on it, especially in a world where we know much of healthcare is about what is sometimes called social determinants of health.

But ultimately in many ways are lifestyle choices that we make about what we eat, what we exercise, um, how we take care of ourselves. So to have the patient become an active participant in healthcare, rather in a passive, you know, go to the doctor's office kind of thing, is really at the heart of interoperability.

So we had, uh, Dr. Rod Hockman on the show and I asked him the question of, you know, who owns the medical record? And he clearly said the patient owns the medical record. Um, now is that universally accepted or are you still finding some pushback on the patient owns the medical record? Well, um, I'm gonna paraphrase what my lawyers tell me here.

Alright. Um, uh, that's always sort of a irritating thing for, for a interviewee . Um, but . I think with the exception of Vermont, I believe where I think the patient legally owns the medical record. Legally the provider who generated owns it. What we're really talking about is who has access to it and control of it, and a guaranteed right of access.

Under hipaa, under the Health Insurance Portability Account Affordability Act, um, that right of access, which hasn't really been much of an issue. 'cause historically the right of access has just been go to medical records, but now, electronically with the Office of Civil Rights and, uh, you know, ONC in the department of HHS, uh, with a lot of help from the White House.

We are making it so that patients have operational access to their records. That's what's really needed here because the ownership issue is on the patient's ability to choose their provider, figure out what the value, the economic value of their care is. That's where the ownership resides, and that's what we are really bringing in.

I think that's the modern way of thinking about it. That's interesting. I I never made that. That much of a distinction between ownership and access, uh, 21st Century Cures Act is really represents the fact that this idea of freeing the data for the good of the community, for the good of the patient, uh, for better outcomes is really a bipartisan, I mean, a bipartisan effort.

It's at, at HIMSS this year, we saw four administrations represented. Um, all saying essentially the same thing, which is yeah, we have to, we have to enable the, uh, innovation community. We have to. Um, so, you know, I mean, talk a little, little bit about the . 21st Century Cures Act. And because I, I think people feel like this is, this administration is coming down with Right, with all these things, but that's not really the case.

Yeah, no, that's a, that's a great point to make. Um, there's been a lot, and certainly o Office of the National Coordinator, there's been a lot of, um, uh, bipartisan continuity, um, uh, for, for absolute chore. So what has been noticed under President Obama, um, . And the coordinators, um, so we're talking, um, at the, you know, David Blumenthal, Farzam Sha, Karen de Salva, and Vandel Washington to be, um, to be clear is, um, and what Congress had noticed.

More importantly, since it's a law. Is that a lot of times there was information blocking there. I wanna make clear one thing you said for we think there will be benefits to the broader community, but a lot of this is specifically the patient's right to access. So that's where the, where the legal, um, calling is.

And a lot of that came from not having application programming interfaces or having them and not opening them up. So what Congress said is, look, this is, this information is in many ways a public good, right? Paid for either directly by the American tax payer or indirectly through the way we apportion.

And, um, so this was a law signed by President Obama. Um, I can absolutely assure folks, um, that President Trump, the White House Secretary Azar administrative r are very much . Obviously ONC are very much, um, in sync with giving patients these, this right and making that highly operational. And it is absolutely bipartisan.

We got, uh, in the public comment period, we had a letter strongly endorsing the approach, uh, in our rule making, uh, to that, to that law by all, um, six of the prior national coordinators. Oh, wow. So, um, so, uh, Dave Railer, Rob Kalodner, and the, and, uh, the, you know, the, the four coordinators. Um, and we've worked, worked together on a number of things.

So, uh, absolutely, uh, bipartisan, strong bipartisan support, and a shared vision. Of all of the six prior coordinators as well in getting this in front of patients. So some of the opposition will come around privacy and it'll come around complexity. So from a complexity standpoint, we heard a, uh, at a recent user group meeting, , we heard essentially that this is way too much work.

They're going to set the EHR community way back. Because all we're gonna be working on is building these APIs, and we're not gonna be doing any innovation for the next, i I think it was five years, or three or five years, whatever it was. Yeah. I mean, what, what do you, I mean, you've been doing this for a number of years.

Yeah. Well, um, without getting into specific user group meeting events, , um, I, you know, the comment was made that you would need an individual, API for every combination of . Um, data shared. That of course is computer science nonsense. To be sure we have passed variables into functions since the dawn of time.

It is an extremely basic computer science concept, and, um, that vendor as well as I think all of the other major vendors already have fire APIs existing today. Now, that's not to, that's not to say that this . You know, what we're proposing in the rule is, is straightforward, is having the EMR database have a sort of fire endpoint, so a fire version to initially start around the US core data for interoperability.

Things like medication list, problem list, allergies, notes, um, and so that is a, um, data, a server with an address on the internet. That then the patient authenticates to, in the exact same way with the exact same methods that they do to provider portals today, but with their smartphone app. So this is very patient empowering.

Um, we think it is a very straightforward thing to do. Um, the vendors, many of them have already done it, have it up and running. So for example, to the point that was made on, you know, that it would take to the umpteen, zillion APIs, I think was the statement made. Um, one user group meeting, um, that, um, you know.

The, the vendors have, um, already done this with Apple and healthcare, right? So if you look at Apple's health kit, there are literally thousands of endpoints, um, . That from hundreds of separate organizations that people can access today. So those are fire endpoints. So there's already a proof statement that this exists.

Right. And there's also third parties that have developed these APIs. Yeah. So, um, now, you know, I think to your point, um. This is a potentially a transformative event for healthcare in terms of whether, um, you know, who has the power, who has the control, and, uh, you know, there's, you know, people who don't want the world to change.

So the, the last two things, uh, well, I, I have to touch on privacy 'cause Sure. One of the other arguments is, um, that the framework for securing that data is not clear yet. So, you know, some, uh, . Nefarious actor could write an app and give it to my parents. Who would just Right. You know, and we could have another, yeah.

So I, so I think there's two things to think about here. One is security and one is privacy. So in security, we're doing the OAuth two authentication. That's a straightforward thing. It's used in, you know, the military banking industry, brokerage industry. So we have a lot of . Data points that this is a very secure, um, uh, very secure approach.

And obviously this will evolve over time. Um. It. Any access to the patient's data is generated by the patient specifically themselves. A number of folks have said, though they know that is not to be the case, that just anybody can somehow just randomly get the data. That is not true. The patient, um, is the one who has to authenticate.

What you're, what's been raised, I think is a valid issue to, to think about. And of course, we're not thinking about just in healthcare. We're thinking about it with everything in data or secondary uses of data, right? So this is the issue with the European GDPR. This is the issue with the California Consumer Privacy Act.

Um, and, uh, this goes to . Four apps that patients have chosen. You know, and of course probably the most widely used businesses that exist purely because they're selling data are of course Google and Facebook. I. Right. That is, you know, as, uh, um, one of my colleagues puts it, you are the product in, in, uh, yeah.

With those companies. Yeah. If you can't figure out the monetary how to monetize, right. So, you know, in healthcare, I think they're going to be in a variety of different business models. Um, and that's what we want to encourage. We want to get competition in there and to give people a choice in lower prices.

Right now, the law is that if you mislead people on what you're doing with that data, you're subject to the Federal Trade Commission, deceptive business practices that, so that was, for example, the $5 billion fine to Facebook, uh, Congress is, and we're, we're looking at what things we can do, um, with our current authorities.

In terms of this OAuth two authentication process to hold apps accountable for certain business behavior as part of the authentication program protocol, there's a lot of interest, obviously, in Congress on, you know, reuse of data, secondary use of data. Um, a lot of bills currently, you know, floating through for, for consideration.

Something that I think is very important here though, that is part of that new technical world we live in, is we've historically thought of data, health data. It's just that HIPAA data, right? The medical record, whether it be paper or electronic. In this modern world, the vast bulk of your health data, and there are even sessions at Health two Oh, um, that are going to talk about, this is my understanding.

The, um, the vast amount of data that can allow inferences around health has nothing to do with the medical record or HIPAA or ONC or the CURES Act for that matter in any . Way, shape. So if, if somebody accesses your GPS data and you're at the SD clinic or the HIV clinic or the methadone clinic every week, they have a pretty good idea of what your medical problem is, right?

If somebody says, Hey, your, your, your main trip every day is to the liquor store or the bar or McDonald's, um, there's vast amounts of highly actionable . Data that's inferred. If they download as they can, their accelerometer data say, Hey, bill, or done, they don't seem to be doing any exercise. Yeah, right.

They're just sitting there moving a tiny bit. Um, and I. You, you know, whether this is credit card data, um, search data, um, all of that, um, is, is um, gives vast amounts of health information. So I think part of our encouragement, um, for people to think about, um, is to think about health data in its totality as, as we think about what to do next here.

All of that having been said, all of that having been said, what we're really talking about is does a patient have a right to get their data right? All the people who want to protect the patient, pretty much all of whom seem to have huge economic interests and having no transparency on their business models.

It should be the patient's choice. If you don't wanna put your data at risk, you don't have to download an app and you're exactly the way you are today, but it's the patient who should choose that. Not, um, you know, some paternalistic, self-interested, you know, provider organization. Right. And, uh, you know, we could close there except I wanna do a Simon Sinek on you.

So we begin with, okay, we begin with why. And the why. So what does, what does healthcare look like? I. Once we let, let's assume 21st century's yours. We we're, we're publishing, you know, prices. People can see and have, we create, will we create a market? That where the market actually works in healthcare, will we, or is it possible, is it possible to build a market where people can look and say, Hey, this provider's good, I'm gonna get better outcomes, there's a better cost.

I'm not, yeah, yeah. I think, um, color me. Is that a goal? Yes, it's absolutely, it is absolutely unequivocally a goal. Um, it's the central goal, in fact, is to put the consumer back in charge. Consumers are in charge. When there's a free market, yeah. Nobody told you what kind of car to buy, right? There's a free market and you pick what car you want.

You don't want a junker beat up. We're here in Silicon Valley, people seem to have a lot of money and drive fancy cars, whatever. Um, the, what we're trying to do here is by having information empower consumers to do that. Now clearly, . We are in a funny kind of world where, um, we have a lot of third parties buying our healthcare, whether it's the federal government through Medicare, uh, or Medicaid, whether it's employers.

And so that if a third party is buying it, it's sort of taken away from us. It's worth noting, however, that increasingly, because of the costs, the more and more of these costs are actually being shifted to the public. So roughly, roughly half the spend for people who are covered by private payers, um, is born by the patients directly.

Not via the insurer. Of course, economically they bear the entire cost 'cause that's coming out of their, their paycheck. Um, in that world there's going to be a lot more shopping. We're already starting to see that. And . At a whole bunch of edge cases, and it is going to happen more and more and more. Um, frankly, in some of the, um, Medicare world, you know, there's starting to be cost shifting copays.

Um, and, you know, Medicare beneficiaries have a number of out-of-pocket costs that ultimately they're, um, responsible for. So, . I think the combination of modern information technology and folks who are at economic risk is, is, um, going to power that even, even if we don't really make any fundamental legislative changes.

Well, as a, and of course the president is huge on price transparency, so you're gonna be seeing rulemaking. To make that easier for the American public. Well, as a patient and a technologist, I hope you're, uh, successful. Thank you very much. Thanks. Pleasure talking with you. Thanks. ONC and HHS wants to engage and empower patients, and they believe that by putting data in their hands that uh, we are going to get a, a whole new set of engaged and empowered not only patients but consumers.

Please come back every Friday for more great interviews with influencers. And don't forget, every Tuesday we take a look at the news, which is impacting health. It, uh, keep your feedback coming, bill at this week, health it.com. It's all really helpful, good, bad or indifferent. It helps us to make a better show for you.

Uh, this show is a production of this week in Health It. For more great content, you can check out our website at this week, health.com or the YouTube channel this week, health.com. And go to the top, right click on uh, YouTube as the quickest way to get there. Thanks for listening. That's all for now.