Amy Gleason’s Push to Modernize Healthcare

Melanie Marcus: Our guest today is Amy Gleason. You may recognize Amy for her role as administrator of the US Department of Government Efficiency and as deputy administrator and chief product officer for the Centers of Medicare and Medicaid Services.

Amy’s experience runs the gamut: nurse, entrepreneur, technologist, caregiver, and all these roles inform her leadership as she works to bring system-level change to healthcare. But why is she doing this work? Well, no surprise here, but Amy’s “why” is the patient. Her lived experience as a caregiver for her daughter shows exactly why we need to make meaningful change and progress in interoperability and patient access, and today she’ll share with us her ideas on how we can make that happen sooner rather than later.

Welcome to the show, Amy. I’m so happy to have you here with us today.

Gleason: Thanks so much for having me.

Marcus: Well, let’s start with a totally off topic but super important topic. I hear there are some changes at CMS in terms of how it’s structured and how it’s working. Can you share some of that with us?

Gleason: Yes. So last week we announced that we’re creating a new department at CMS, and it's called the Office of Health Technology and Products, and it's a way to really create a center of gravity at CMS for technology. We're at this amazing place where technology has all this capability, and traditionally at CMS and at many places in the government, it's split into all the different centers.

So you have a tech group that's working on Medicare, and a tech group that's working on Medicaid and et cetera. And so this is bringing those things together so that there can be a strategic plan on how we take advantage of all the momentum and technology and deploy that from one place instead of having it siloed in different groups.

So I'm very excited to be leading that group.

Marcus: Our first question beyond that really goes to that role. In a nutshell, when we think about a better way in healthcare, what does it look like for a typical experience for patients and families?

Gleason: Right. I think a better way is not the experience that we have today for patients and families. It's really challenging to be a patient. It's not something that is easy, and it's not easy to be a caregiver either. And so I think a better way is that patients get everything that they need in the time that makes sense for them and in the way that makes sense for them.

Some patients like to go in person and sit in front of a doctor and talk to them. Other patients, like my daughter who's 27, wants to just get information quickly, maybe through an app. And so I think we need to give people access that's available anytime they need it in the way they want it, and it needs to follow them without requiring faxes and paper like we have. We should be adjusting to the way the rest of the world works and have modern technology for patients and easy access to services.

Marcus: Oh, I love that. You gave a TED Talk back in 2020 about your daughter's experience as a patient and your experience as a caregiver. You described how that shaped your path and reshaped how you see the healthcare system. Can you take us to one moment from that experience where you thought, “This should not be this hard. What is happening?”

Gleason: Yes, it's a moment that I definitely will never forget. It's what shaped my life in a very different way than it had been before. We’d been having a lot of trouble with her health in general, but we'd been on this journey trying to figure out what was wrong with her, and she was 11.

She was a competitive gymnast, and she couldn't stand up off the floor, couldn't walk up the stairs. She had just all these weird issues, and they finally decided to do a skin biopsy—we thought a little bit unrelated to all the major issues that she had. They did a punch biopsy on her knee and her elbow.

But somehow I knew that this was going to give us an answer, and I knew it was going to be serious, but you try to tell yourself stories in your head, that maybe it's just something simple or maybe this won't really show anything important. They did the biopsy. They told us it would be a week for the results … I don't know if you've ever waited for biopsy results when you're really worried about something, but a week is an eternity.

Every minute you're thinking about this and worrying about it, and you can't get it out of your head. We go through this week where every time I look at her, I'm trying to figure out what's going to be happening in the next week. We finally get to the day where we're going to get the results, and it's almost an hour drive to the doctor's appointment.

We get in the car, we drive there, we sit in the waiting room for quite a while. We go to the exam room and sit for quite a while, and then someone comes in and says, “We're going to have to reschedule you because the results didn't come in yet.”

I ask, “Can you call and try to see if they can get them?”

“We already did,” they say. “We don't have them, so just go home and we'll see you on Monday.” This was a Friday, so of course, this is now a whole weekend of waiting. We get in the car and we're about halfway back home and we get a phone call from the doctor's office and they say, “Oh, we just got your results. Can you come back?” First of all, it's not an easy answer, because they would've just told us on the phone since we just left there.

Now we're in this anxiety-driven car ride back to the doctor's office. And they did at least put us straight back into the room instead of the waiting game all over again.

But a doctor that we'd never met came into the room, and she tells me that my daughter has a life-threatening disease. And she has tears in her eyes as she's telling us this. Of course, Morgan is watching me to see how I react, and she's already heard life-threatening, which when you're 11 is a scary term to hear, but she also sees that the doctor has tears in her eyes.

I don't want to ask any questions because I don't know what she's going to say. So, I ask the bare minimum number of questions, and they tell us we should go see her pediatrician, and they should start her on steroids. But they don't want to do the dosing because they want her pediatrician to see her.

I immediately get in the car and I'm texting or calling my friend who's a doctor: “Can you please look up everything you can find about this? Because I don't know what we've just walked into.” We drive to the pediatrician's office, and before I go in, I call him and he gives me a brief update of what he's found looking it up.

It's a rare disease: juvenile dermatomyositis. Not very many people have it, so there wasn't a whole lot of information he could tell me. We go into the pediatrician's office, and she is looking up this disease in books and she's googling it. This wasn't my daughter’s normal doctor. He was of course out of the office that day. And so, she is trying to figure out how to help us and says we need to get an MRI that day before she starts the steroids. They gave us an order and send us on our merry way to get an MRI. We call the radiology place, and they say, “Oh, we can see you next week.” But no, we have to get this today. We go, show up, they work us in, and we get there, and they're like, “Oh, for this type of MRI, we don't have the right equipment. You have to go to a different location, so we'll have to schedule you for next week.” I'm a little emotional at this point, and I get them to pay attention and say: “This is super important. We have to do this today.” So, we drove for over an hour to a different place where they did the MRI, and then we go home. They had also done a bunch of lab work, and at 2:00 in the morning, our phone rings, and they call to tell us that she's having a heart attack, they think, and that we should go straight to the emergency room.

“What? You got this from her lab results, like today?” And they said yes, so I start asking more questions, and I realize that the inflammation from this disease is so profound that it's showing up in one of the markers, and I realize that we probably don't need to go to the hospital. But most people probably would have never known that. I called her pediatrician, and we walked over it, and we didn't go to the hospital. But it was quite an alarming call to get.

So, this was our first 24 hours into this disease, which you can see was 100% not anything about the patient. We had to wait. We didn't get very good information about the diagnosis. We drove a long way, booked our own MRIs, called insurance, then got scary information in the middle of the night … not a very patient-centered way to get welcomed into this rare-disease world. It's been a journey ever since, but that was definitely the moment that I realized how hard it is to be a patient and caregiver in our health system.

Marcus: Oh, my goodness. That piece of your story I hadn't heard. That is tremendous. I heard this speech this weekend from someone who's talked about moments in your life where you have before and then you have after, and you just described exactly that. I can't even imagine, as a mom myself, I can't imagine. So, in that moment, what information or support did you need? What could have been different?

Gleason: Yeah, so many things. First of all, I think waiting a week for biopsies is pretty outdated, even back then. And so I think we should have much faster diagnostics. I've also undergone biopsies myself, and my mom had lung cancer, and so I've been through this process several times over, and I think we should just really think about how we can do this.

Of course, we want accurate results but using the technology we have to deliver them much quicker. I also think you don't necessarily need to make someone drive almost an hour to get results. I think you can do a lot of this over the phone, at least if that's what the patient wants. I think that things should be around what you want. I would much rather get something over the phone faster than wait for an appointment or have to drive in, and I think a lot of people also feel that way. Other people, like my dad, probably want to be in person with someone. So, I think the bottom line, I would say, is that everything should really be done around what the patient needs and wants.

I think we need to take advantage of the technology we have and rethink the experience from the ground up, and not just try to put technology into what we've known forever, but instead reimagine the entire thing.

Marcus: Oh, I couldn't agree more. So, let's think about that. Speaking from your background as a nurse, entrepreneur, technologist, caregiver, all of the above, where is technology helping patients the most right now?

Gleason: I happened to stumble upon a patient group the day that my daughter was diagnosed because I started reading every page of Google, and I found this nonprofit called Cure JM that had a message board. Nobody told me to go there, and that's another thing that would've been super helpful if we had been referred to a patient group. But that day I posted on the message board, and a mom whose daughter had the same disease for 13 years called me and said, “Get a piece of paper. I'm going to tell you everything you need to know.” She sent us to the world expert in Chicago, gave me her email address—and the expert answered the email that night, Friday night, which is shocking. I never imagined that we would get an answer so fast. But immediately I felt like I had answers that I had not gotten through the medical system, but I had gotten it from other families.

That's a key part of ways that technology can really help connect people. When there's only about 2,000 kids with this disease in the US, being able to find people that can help you understand what's going to happen very easily is great. Technology now gives patients a way to really understand what's happening with their body and their issues. I've seen it firsthand with my daughter. She takes 21 pills a day and gets two infusions a month, but she also has this huge as-needed bag of drugs that she has to try to figure out which one to take when, and she's really started using her wearable devices plus her medical records in conversational AI and asking it, “What should I do? I'm feeling this way.” And sometimes it tells her to take the medication, sometimes it tells her maybe she needs rest, or she needs to eat a banana or something different that she wouldn't have thought of. From an everyday support and access perspective, that's just going to change the way that we experience healthcare.

Marcus: That's amazing. I've seen the impact of AI myself in my personal life. What conventional thinking about healthcare technology do you believe still needs to change the most?

Gleason: Oh, I think the biggest thing probably is that we need to stop holding onto the data in silos, and we need to make sure that everyone that needs it has it. So, starting with the patient, it should be something that the patient just has easy access to in the technology or a way that they choose to have that, whether that's a paper chart or whether that's in an app.

Again, what the patient wants. But I think the data and the lack of people being able to get easy access to it has really been what slowed innovation in healthcare, and we've built a whole system around this siloed data. That's what I believe made my daughter get a delayed diagnosis for a year and three months.

Getting the data moving is probably the single biggest thing that we need to do.

Marcus: Why is it still so hard for health information to follow a person when they move away, when they change doctors, when they have multiple doctors, when they have multiple health settings? Why is it so hard?

Gleason: Yes, it's definitely not a technology problem anymore. This is really a cultural problem. You've seen the technology—and interoperability—in every other industry. As I said, you can get a self-driving car. So, we've just moved to where technology is not the issue. It’s much more about trust.

And so last year, we did an RFI actually asking the industry, “Why isn't this working?” We've done regulation for 20 years. We've done $30 billion of incentive payments. We've had information blocking and created HIEs and TEFCA, QHINs … we've done all of this stuff, and you can find pockets of success, but by and large, the data just doesn't move the way it should.

The main thing is that the industry has been put in a very cautious space through a lot of misinterpretation and myths, especially around HIPAA. If you're a patient, you hear that as an excuse for the reason you cannot do anything in healthcare. Everything you ask is like, “Oh, I can't do that because of HIPAA.” It's created this huge amount of distrust in the industry and a worry about who else is going to get the information, as well as people hoarding the data in their silos and being scared to share it. So, one of the biggest things we need to do is improve trust.

Marcus: Trust is a big theme, something we spend a lot of time thinking about here at Surescripts for all the same reasons. When you're exchanging information across healthcare, you need to make sure that it's the right use, the right time, the right person, the right data, and so forth.

So, CMS's theme is independence from paper and clipboard-based care, part of the CMS pledge hundreds of healthcare organizations signed, including Surescripts, in 2025. Can you talk about the pledge in terms of trust?

Gleason: Last summer, after we had done this request for information and trying to understand what the real problems were, we decided to launch the CMS Health Tech Ecosystem in our effort to kill the clipboard and axe the fax. So, we had an event at the White House last July 30 with the President, Secretary Kennedy, Dr. Oz, and me, and we got about 60 companies to start. The idea was to lay down a vision and say, “We can't regulate our way to success here. We really need to get all stakeholders to work together and move quickly in a world where technology moves.” A lot of companies release new code every single day in this world, but a lot of healthcare companies still release code just every year. We need to move much faster, in a more iterative manner. And so, we laid out a vision and said, in one year, we want to make a ton of progress in this, and we want to put patients first. We want patients to get their information, but we also want to try to solve some of the problems around trust.

Since then, we have over 800 companies that have joined us, and we have a Slack channel set up so people can come in and work together, and we will regularly have calls on different working topics, things like identity and trust and how networks communicate with each other. How do we make sure patient apps are trusted and are safe for patients to use, and that they understand how their data is being used?

Marcus: That's fantastic. Collaboration in healthcare and solving these big issues is the key. We've explored it many times on this podcast over the last five years, and it occurs to me that you have put collaboration on the superhighway. What are some successes and some challenges in collaborating this way?

Gleason: Funny you say that. Steve Posnack calls it the speedboats and the tide. We're the speedboats racing out, and then as we find out what works, we can rise the tide that is TEFCA and bring people along. Some of the major successes are that most of the big companies and the small startups that pledged originally last July 4 have delivered on their commitment. So that is super exciting, and we have a ton of patient apps that are now coming out. So, the main things are Kill the Clipboard, which is a patient can verify their identity one time using either ID.Me or Clear, and they can click one button and say, “I would like my data, please.” And it could go through this series of networks we call CMS Align Networks and bring their data back to the app that they choose, and then they can use a QR code to share that information with their provider, either in person or online if they're answering an online questionnaire, for example.

Marcus: What are the challenges in this incredible collaboration experiment?

Gleason: Oh, the challenges are many. It's like pushing a snowball uphill. It seems to get a little heavier every step that you take going up the hill. I think the biggest challenges, as I've said, are really trust, and so that's the biggest advantage of having all stakeholders together in one place.

Marcus: I've got to take a little aside here on the Slack channel. I’m on the board for the Sequoia Project and lead the Interoperability Matters steering committee, which is really just orchestrating these cross-industry work groups. How are you using technology to get this kind of work done?

Gleason: Having the ability to do asynchronous communication in real time is great, and I think Slack is one of the tools that allows you to do that. We've also used Google Docs widely as part of this, that the community has led each work group for each challenge, has a private sector lead and a public sector lead. We've paired someone with our team with someone in the private sector, and they co-lead these. But it's primarily led by the private sector. We're just there to convene and help keep things moving, and it's up to all the different companies and groups and patients to figure out the right solution.

Marcus: Can you talk about the role of TEFCA and QHINs with the CMS Aligned Networks?

Gleason: All the QHINs are participating in the health tech ecosystem as CMS-aligned networks. They've all pledged to join, and they're participating in these work groups. The idea of this is not in competition with TEFCA, which is a question I get a lot. As I said, Steve refers to us as the speedboats racing out ahead. Our job is to get people to try things and to move them into production. I think we spend a lot of time in healthcare in these little work committees of small groups of people, and we test things, but it's usually a fake patient sharing data back and forth. And I think that's part of what takes so long is because we use those things, we write specs, people go implement them, and then they say, “Ugh, this doesn't exactly work.” The biggest thing is we need to be able to have a way to take full things into production, find what works, find the edge cases, adapt as you go, and then once we have it working in the market with most of the major players, then you can use TEFCA to come and bring the rest of the people up to raise that tide or raise the floor, as we say.

Marcus: Can you share a little about the work that CMS has been doing lately on prior authorization?

Gleason: The regulation goes into effect on January 1 for prior auth for medical. The prescription side is still coming along a little bit more, but for medical, we just kicked off a working group, and actually just this last week we had a listening session, a round table at HHS where we had the major payers and providers who have signed this prior authorization pledge, which is our first new pledge we've added in the ecosystem since last July. It’s the same thing: We're pairing up providers and payers and getting them to go live in production and then move that quickly through so we can find out what's working and what's not—way ahead of the deadline. We've challenged them to go live with at least one pairing by October 1, and then with everyone by January 1.

Marcus: You've said that data being available isn't the same thing as data being useful. As a caregiver, what's the gap between those two things?

Gleason: People do a lot with patient portals, for example, and I have been trying to make sure that this access patients get is in a way that's easy for patients. So, as I said, you verify your identity, you click one button and get your data, not signing into all the patient portals. My daughter has 51 patient portals that we know of. That's way too many places to go and remember usernames and passwords and get siloed information. That's not very useful, although AI is changing that. It's got to be the right information at the right time and in a tool that you're able to use it. That's the main thing we're trying to change with the ecosystem, is to make that useful. Available and useful.

Marcus: Let's talk about change management and leadership because that is the thread through this whole conversation. Change doesn't always come as quickly as we hope it will. So, in healthcare, resistance to change is often framed as necessary risk aversion. You talked about that with HIPAA. How do you distinguish between healthy caution and inertia?

Gleason: I think you can tell pretty quickly whether someone is trying to figure out whether they really want to protect someone or whether they're just putting up blockers and using caution to say what could go wrong instead of what could go right. We have to stop being so worried about the possible small things that could go wrong and realize that we're stopping great things from happening to people by keeping it from happening. I think we do need to make sure that there is security and privacy in play, of course. This is people's health information, and you have people that feel very strongly on all sides of this. My daughter started talking about her healthcare publicly when she was 15 because she really wants a cure, and she wants people to know how hard it is to be a patient, and that there needs to be change. She's put her information everywhere, and she doesn't care. That's on one side of the equation. Other people are very private and do not want any of their health information to be shared anywhere, even with all of their doctors, so we have to respect patients' wishes where they are and meet them where they are. But that doesn't mean that we can't make it happen on both sides.

Marcus: Listening to you talk about big systems, building trust, and working inside organizations that don't always move so quickly, it's clear this isn't abstract for you. What's the clearest signal that the work is getting done?

Gleason: Once patients get access to information and modern tools and have the power to use it, then I think there is no stopping any of this work at that point, because patients are going to push this harder and harder. You hear the roar coming from patients. It's been building over time. I've been hearing about patients being in control and getting at the center of care for a very long time, but I think this technology moment that we're sitting in is the one that's actually tipping this over.

Marcus: We're all patients, right? I've been in healthcare for my entire life. My dad was a hospital CEO and in healthcare technology for most of my career. We all have stories. This is moving very fast, faster than I've ever seen in my career, and I'm hopeful that this speed means we're going to make a major impact on patients very soon. A lot of the work that you're leading is helping do that, so thank you for your leadership.

As we wrap up, I want to reiterate how directly your experience as a caregiver for your daughter connects to the work you're leading now. Yes, the scale's bigger, the systems are massive, but I think the basic test for success is the same: that care moves faster, gets smarter, and feels more human.

So, let's recap the key question I asked you at the start of our day: What is your better way in healthcare? What's the experience of the future that you want to see for patients and their family?

Gleason: Yes, I think the better way is that a patient seeks care in the way that they would like to seek care, and their medical story is already there. Nobody has to re-explain it. Nobody has to fax or spend time waiting on the data, and the patient gets to just be the person or the mom, in my case, and just experience it, not be the switchboard. That is the biggest thing, to be able to help people get access when they need it and the way they need it without having to dig up information and retell their story.

Marcus: Is there anything that we haven't covered that you want to make sure we cover before we close?

Gleason: I’d really love for everyone that is not part of the Health Tech Ecosystem to come and join it. It’s open to anyone who wants to come and see healthcare be better. There's a category for everyone. You can be a payer, a CMS-aligned network, a provider, electronic health records, innovators, patients and caregivers. States can participate. We're even getting federal agencies involved now. If you don't fall into any of the categories, or you can't figure out where you fit, we have a friend of the ecosystem for people that really care about this but aren't exactly sure how they fit. So, if you Google CMS Health Tech Ecosystem, there's a webpage with a pledge link. You just fill out that form, and you get added to our Slack channels and can come start participating in the workgroup and be part of the answer. I think it's astonishing in healthcare that a lot of times people just delegate their decision-making to others instead of showing up and saying what they need. I've been hearing my whole life that providers are tired of people dictating information to them and that they aren't part of the solution. This is your chance to be part of the solution. It's an open call. Please come join us and don't let other people make the decisions for you.

Marcus: Amazing. Amy, thank you so much for sharing your story and the work you're leading now. It was a pleasure having you on the show.

Gleason: Thank you so much.