Episode 42: Navigating Healthcare Policy with Susan Clark

In this episode of the Informonster Podcast, Charlie Harp sits down with healthcare IT rockstar Susan Clark for a candid conversation on the evolving world of healthcare policy. From the incentives that drive real change, to the challenges of interoperability, data quality, and patient identity, Susan shares her insights on what it takes to align policy with purpose.

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Transcript

Charlie Harp (00:07):

Hi, I am Charlie Harp and this is the Informonster podcast. Today on the Informonster Podcast, I have Healthcare IT rockstar Susan Clark. Susan, hello.

Susan Clark (00:17):

I am so excited to be live in studio for this recording.

Charlie Harp (00:21):

That's right. We're in the Informonster podcast studio, the real legit studio.

Susan Clark (00:26):

It's the hotbed of health IT in the middle of Indiana.

Charlie Harp (00:30):

That's just because the air conditioning doesn't work in here, but it's okay. We'll make it. It's only going to be 30 minutes or so. We'll survive. So Susan, what I typically do, I am not a policy person. I spent a lot of time in the weeds building things and have recently got more involved in it with the work I've been doing on the PIQI framework. So I know that a lot about policy, a lot about what's going on, and I follow you on LinkedIn and appreciate your insights into what's going on. I am delighted to have you on the podcast, but for the folks that listen to the podcast that may not have

Susan Clark (01:08):

At the way back of the beginning, I attempted to, I did go to college for music and I found out I didn't love it academically, so I just wanted to be a rockstar. Then I moved home and said, I don't know what I want to do, and I got a job at the local clinic, at the front desk and never left healthcare ever since. And that's where my foundation of passion for workflow and recognizing how everything we do impacts clinicians, patients, the whole process flow. So that is the start. And then if you fast forward to the early aughts or the mid aughts, I was working as a health information management director, which that's where my credentials are in through AHIMA, American Health Information Management Association. That was my life. And I was at the Student Health Center at Purdue just up the road.

(02:03):

And we had paper charts as everyone did, and I didn't know that it wasn't, it was weird to want to be electronic at that point in time. And I said, let's have an electronic record. This is silly. I can bank online the usual. And ended up getting our leadership on board and said, okay, let's try that. And then student services got in the mix and taught me how to implement a technology system.

(02:32):

So all of that. And then Purdue became a regional extension center when meaningful use then promoting interoperability came out. And I moved into that part of Purdue and that's where I learned the policy piece because it was so critical when CMS or ONC would put something out of here's how those providers are going to get incentivized for getting their electronic health records out in the community. So that was the start of that. And later on got involved with the health information exchanges, state government and some privacy and security and just all kinds of things. I touch everything, but the policy is my favorite thing of how does it influence what you have to do and how can we go the other direction and influence what policy will do to help make things better.

Charlie Harp (03:23):

It's one of the things that I learned many years ago in healthcare is you can want to do something good, you can want to do something right. But we operate in an ecosystem that's based upon incentives, whether it's money, whether it's regulatory, and if what you want to do is not aligned with incentives, it's a huge uphill battle. And so for me, when I think about policy and I think about where we are relative to where we've been, I think today, even though there's a lot of chaos, there's a lot of things that are lining up that could actually create the right environment for us to modernize a lot of these systems. Because for me, on the other side of policy, you have the ecosystem where we're trying to make the most of the data so we can help deliver all the promise of healthcare it. But one of the things I've struggled with is kind of this misalignment between policy and purpose. And so I'm very excited to see a lot of the things that are happening right now around the different things coming out of ASTP, the different things coming out of CMS. I'm hoping that it actually culminates in us doing the right thing for the right reason, in the right direction.

Susan Clark (04:41):

It does, but it is the incentives that are the key incentives or enforcement. So those, it always comes down to make the movement because technology is never the problem as far, well at least in modern day, it was a little bit of a problem in the early days. Yeah, it used to be. We have to admit that. But we can do that now. We can share information, we can make it good, we can make it intelligent. The problem is always how to incentivize, who has authority, who has enforcement power, who says go and makes it. And then the adoption problem is way deeper than that. But we can touch that in a minute. And really it's not just the ASTP/CMS. So maybe for folks that haven't policy before, some different levels that first there's the legislative and that's where the appropriations the money comes from. So it's really important that we have legislative agreement and that there are acts under which rules can come, and that's when they get assigned to agencies to then create the details from the legislation, which can be federal, it can be state, a lot of different ways that can come through. So there's a lot that's happened. So examples of legislation would be the Aura. That's how in the High Tech Act came out or 21st Century Cures Act,

(06:11):

But then a whole bunch of other things come out of that because then it says, okay, CMS, you're going to do this and ASTP, you're going to do this. So that's where that authority is given. So who's allowed to then take money and say that we're going to do something with this. So that's the legislative level. And then at the regulatory level, that's where rules get written and they will be that we get a proposed rule. So that's another opportunity to influence things. So something will get proposed. You can comment, that was what got me addicted was the first time that something I had responded to a comment. And then the final rule comes out and it says, many commenters said this. And I went, I am many commenters. I was, that's me. And so it was kind of this endorphin hit of I just influenced policy. I am sure it was.

Charlie Harp (07:07):

That's very cool.

Susan Clark (07:08):

The simplest thing of something with probably EHR certification, I don't know, but that's kind of how it works. So if you want to, which parts do you want to touch on as far as what's happening now?

Charlie Harp (07:20):

Well, I think first of all, one of the things that's kind of cool is you touch on something important. If you're an engineer like me or maybe a healthcare informaticist out there in the world, you don't. Policy is not just people that are out there talking about stuff. It's people that understand what's going on well enough to be able to make comments on things. Because Congress, bless their hearts, are not sitting around thinking about healthcare. They don't understand the depth of the issues. And so when they're asking for comments, having people that really understand the issues and understand the details, providing that valuable feedback like you did, is really critical. Otherwise, we'll get weirdness coming out of the legislature that we can't really satisfy. It doesn't really drive what we're trying to do. So I think it's wonderful. I haven't done that a whole lot. I probably should do it a little bit more, but I really appreciate that you do it and I think that we should collaborate and create one of those schoolhouse rock videos about healthcare IT policy.

Susan Clark (08:24):

Yes. I'm just a bill.

Charlie Harp (08:26):

A bill. Bill. I bill. I'm just a policy. I'm a healthcare IT policy. Yeah,

Susan Clark (08:30):

I think we

Charlie Harp (08:30):

Can do that.

Susan Clark (08:31):

Alright, next podcast. I'm coming back for the song.

Charlie Harp (08:35):

Okay. You want to be the rock star? This could be a big break. It could be mine. So when you think about the things that are happening right now because a lot going on, what would you put at the top of the list as the thing you're most excited about that's happening from a policy perspective?

Susan Clark (08:52):

Well, excited about would be probably the CMS interoperability framework that we just had the big fanfare in July for our industry. A bunch of people went to Washington and everyone's been signing this pledge that we are going to connect information and it's going to get to our patients, which is not a new thing as much as we wanted to have a beautiful press about it. But I mean, I like bringing the attention to, so I take it for what it was like, okay, let's bring attention to this and let's get some accountability, at least public relations wise. Let's get people on the record saying, I am going to do this because that's one way to move. What's interesting about it though is the aggressive possible timelines and then going back to what really is the accountability? What really will be the, if we don't do it or if we do do it, how do we get there? So I'm about the how do we actually get there? But it is exciting in that all of these major players have said, yes, we are going to come together and make interoperability happen more because it's not that it doesn't happen now, it doesn't happen amazingly,

(10:14):

And it's not pervasive. And anyone who's been a patient or a caregiver, which is pretty much everyone sees it in their real life that it's not working

Charlie Harp (10:26):

Well. And it doesn't really have, I mean for me, the biggest issue with interoperability is it hasn't had a sustainable economic model, which makes it difficult. People have to get paid at the end of the day if they're doing all the work to move the data

Susan Clark (10:40):

And that's it. So when I do put, then, so that was my excited hat. Awesome. We have the momentum, the energy, the interest. I've seen so many organizations that are really acting on this. But then the other part is exactly that. How do we get adoption without funding? How do we get adoption without technical assistance to those that will be using these technologies? How do we get, let's just take one aspect, a big part of this, and I'll name our friend Ryan Halls. I know that you've presented with him and he's always at the center of these things. But I just literally just watched an interrupt chat that he was on where he once again said, identity is key. And it's so that is a big issue that's going to take money and it's going to take standards and it's going to take things that may not fully ready and who does pay for it and who has. So that's where

Charlie Harp (11:45):

Stop. And there's also going to be people that ideologically will fight against the idea of better identity and it, it's one of those things where when you look at what we're trying to do with interoperability, there are a handful of things, but the identity thing is a big deal.

Susan Clark (12:01):

It is. And I learned from, have recently worked at Direct Trust, big fans of Direct Trust and that identity is a big thing that they do. And it was a real eyeopener for me because coming from HIM, AHIMA works really hard on that patient matching aspect into the individual person identity. And that is one aspect, but there are other identity aspects to the endpoint, to the organizational identity. There's identity can take on lots of forms and all of it has to be right and secure. So that's important. But actually thinking of the patient matching, there is an act in existence in Congress right now. It's only in the house. We've been trying to get your state senators to create one in the Senate. It's called the Match It Act. And I can't remember what it stands for, but it's because of exactly what you said about all those concerns about privacy, it's really hard to move forward an actual identity act. So we had to take a step back. There's an organization called the Patient ID Now Coalition who have a ton of organizations came together and still do on, okay, we have some resistance to identity concerns being called out, but what if we just started with measuring the problem to prove we need a solution, which also patient matching has, it's stuck. There's an appropriations clause, I'm probably using the wrong word, section five 10 of the appropriations that says No funding. Again, this is where the money comes in.

(13:39):

No funding can be used for identity, for patient matching patient identity. And that even would be to study it. So we're trying to get around how to get Congressional regulatory action that can identify what are those appropriate standards and what's an appropriate match rate. So the Match It Act is more about going out into organizations and how do we measure what's your duplication rate at your organization and what should it be and what could it be? And there's a ton of really great matching standards out there. A lot of really brilliant people, including our friends at Reagan Street down the street, have done a lot of work on patient matching, but we have no authority to make standards and there can be no funding until, so every time appropriations comes around, we also advocate to have that section removed. And there's always particularly one senator who really is about privacy. And it might be one state south of us that is the problem.

Charlie Harp (14:46):

Without naming any names,

Susan Clark (14:48):

Without naming any names, knows who he is.

Charlie Harp (14:51):

And I'm sure he's listening right now, right? Big fan of the Informonster podcast,

Susan Clark (14:55):

That guy. Yes. Yes. Anyway, so it's just trying to, and that's just showing how slow the movement has to be sometimes that okay, we can't get a full new standard endorsed by the government. And then that comes where things like the PIQI, what you work with, that's when coalitions start forming of, okay, government can't do that or AI, so the Coalition for Health AI exists because we have no AI laws really.

(15:25):

And that's something I've been listening to. The House Energy and Commerce Committee had a hearing on AI this week, the state levels Indiana AI task force just met yesterday. I listened to a portion of that. And then what's happening is the states are trying to create their own laws, which may or may not be. And if you're a company that works in multiple states and other countries and trying to manage that, because federally we can't agree on what those standards should look like. So our coalitions try to take and run with the ball on a lot of these topics.

Charlie Harp (16:05):

So going back to the CMS interoperability framework, one of the things that I think is interesting is I've heard from a number of people who kind of grouse about it a little bit and say, well, this isn't anything new and et cetera, et cetera. The way I tend to frame it, as I say, but I'm also kind of the eternal optimist, I say, listen, it isn't new. It's not pretending to be new, it's talking about TEFCA about FIHR. It's talking about these things. The difference is CMS is the biggest payer for healthcare in town. And it's like, it's kind of like my Peloton. I have it, it's there, but do I have the will to use it is the question. And I think what's nice about what's happening in CMS is if CMS says, you will, and we need to do this same thing with digital quality measures.

(17:00):

If this is how we're going to do this, you kind of have to fall in line and get behind it if you want to get paid. And that kind of gives the industry the will to do it because we live in an industry where people are super busy, they've got all kinds of priorities, they've got fires they're putting out. And I mean for me, I have been the guy in the old Twilight Zone episode where he is like, it's a cookbook. It's a cookbook. I've been shouting about data quality for 25 years. And everybody's like, oh, the quality's fine. And so for me, when we look at trying to use the data for ai, when we look at trying to use the data for things like digital quality measures, I'm just super excited that people are starting to admit and realize that maybe the data quality is not up for the task.

(17:45):

And that's also why I'm super excited and decided to take the whole PIQI Framework concept and put it in the public domain. Because I kind of feel like it's the kind of thing where if we can measure the quality of the data in a standard way across the country, then that sets a threshold that we all have to achieve or we have to aspire to, and that makes everything work better, including when a doctor's taking care of me or my wife or my kids or my friends. So it's important. I think it's an important thing.

Susan Clark (18:17):

Well, first of all, I want to know who everybody is, who actually thought we had good data quality because I do not believe we,

Charlie Harp (18:25):

Everybody I tried to sell to for the last 18 years,

Susan Clark (18:28):

Oh, okay. Oh wait, wait, I have met them. Nevermind. I know who they're, but also thinking of, I'll put my for listeners at home, I have glasses on and flip 'em to rose mode may or may not have roses in them. And my upside of this is because we're now solving that problem, that means look how far we came. So our floor is much higher than it was 15 years ago when it was just, can the office turn on the computer? I've lived that life of, so now we're working on that. So then even better stuff can come next, but it is slow. And that's the thing, change is never fast, especially when you have to deal with regulatory issues.

Charlie Harp (19:18):

Well, but the positive thing is we've got all this stuff that people so many intelligent people have worked on.

(19:25):

We've got FHIR, we've got standard terminologies. It's like we have all the ingredients to take that evolutionary step that we need to take in healthcare. Because for me, the way I look at it, once again, from an engineering perspective, we are living in a time where we have an aging population. We've seen a lot of reduction in the amount of knowledgeable providers where we're starting to transition care to people that aren't physicians. And that's fine, they're very smart, but they may not have the same experience. And even our physicians, what was it, 30,000 medical journal articles come out a month. Scott Weingart at Zinc's once said, this was years ago. And things were probably slower then that if you are a newly minted physician and after you get your MD, you do three hours of research every night at the end of the first year, you're only 12 years behind. And so when you think about where we are with the population with things like genomics, with the reduction in physicians in the time they can dedicate to the patients, it's like the only thing that can really put a dent in that and make a difference is technology,

(20:40):

Whether it's AI or old school analytics or decision support, whatever it is. And for me to do that, we not only need good data quality, but we need the data that we didn't create that comes from other places. And so this whole picture of interoperability, making sure it's the right patient with identity, making sure that the data that we created as a byproduct of the cash registers that are the EMRs that exist today is correct and appropriate. All of those things have the potential to help us kind of take that next evolutionary step into a, let's call it a, I almost want to say not a learning, but a thinking health system that augments providers in a way that we've never been able to do before.

Susan Clark (21:32):

So going back to the AI hearing, the house AI hearing really, they always get super smart people. And I learned a lot about the what's possible because I am not an expert in ai. So starting to really get my head around, wow, that's really cool, but the place where I talk back, because I of course talk back to them then they can't hear me when I watch these things because a nerd, but the only, and the only time I really talked back this one was one of the physician leaders in AI was explaining how exactly that reducing the burden on the providers, improving their knowledge, augmenting and not replacing augmenting. And it was like cool, except for the follow-up question didn't get answered on, but what's the burden and what's the cost to get there? And that's where all of those things are exactly what need to happen. I know that the workforces not exist and even some of our larger health systems having enough workforce, but especially in smaller and rural and then the funding to put it in. So there's such a gap to adoption because even if you put it in having done technology implementations, putting it in does not mean it solves anything if it's not put in well and then revisit it. So you have to continually optimize. And so you have to have a process improvement cycle, which a lot of places they don't have, don't have the staff for.

Charlie Harp (23:14):

Well, in changing, I've been working in hospitals since 1989, it's hard to implement change in a place like healthcare. I've always told people, I know a lot of people from Silicon Valley that do these disruptive startups and I give 'em a lot of credit, but the reality is healthcare is an industry is kind of disrupt resistant. There are so many barriers. You can't just flip the table over in healthcare. It's too critical and it's too intense. And when you think about what it costs to change a system to get everybody trained, because otherwise you spend a billion dollars on something and nobody uses it. So it is one of those things where when people, it's kind of like the sign on a mirror that the objects are larger than they appear or whatever it says, it's like people approach healthcare and they tend to think it's other industries like banking and it is a fundamentally different animal. And the reason why in 2025 we still struggle with a lot of these concepts as an industry isn't because the people in healthcare are not smart. Some of the most brilliant people I've ever met have worked in healthcare for years. And I think the issue is it's a tough environment, it's a very tough

Susan Clark (24:30):

Environment and it's systemically rooted. Something else I thought of we didn't hit on just in the regulatory that may be a game changer and just the article I saw yesterday, HHS is staffing up for information blocking enforcement. So I know when the information blocking rule first came out, one of the byproducts of a lot of organizations who are paying attention, that caused them to figure out what qualifies to have to be shared and what it forced people to do asset inventories of their data that they'd never done before. So that also kicked up data governance. So I think even though this sounds like a big bet, just like a hipaa, it reminds me it's just like HIPAA

(25:19):

And they start doing audits and it scares people into compliance. Some people still don't get scared enough and then they get hundreds of thousands and millions of dollars of fines, but whatever, still not scared of hipaa, but for the most part it moved people into actually doing security risk assessments, actually making better security posture. And I think this could be another, I didn't think of when you asked what you're excited about as it at least could be a mechanism to make people a little bit more involved or engaged in how do I make sure that my information is in a place that it can move and should move?

Charlie Harp (25:59):

Well, and that's another thing too. It's interesting. I have a lot of friends that are not, believe it or not, that are not healthcare IT wonks a few of them, but they ask questions like, well, why can't I just have my data? Why can't my data just be here or there? And it's a fair question,

(26:15):

But the interesting thing about it, if you look at healthcare data, on one hand you've got information blocking, which is thou shalt share information. On the other hand, you have HIPAA that says, thou shalt not share information. And then you have variabilities and things like consent where there's certain types of information I don't want you to share, and there's certain people I don't want you to share it with. So it's one of those things where I don't think they have the same kind of constraints in banking. I'm sure there are privacy laws and things in banking, but it's one of those things where anybody to try to navigate, when I think about what an HIE goes through or what any of these folks go through or QH goes through when it comes to how do I share, who do I share, what can I share? It's a Gordian knot and it's challenging.

Susan Clark (26:58):

Yeah, I hadn't really thought about this before because we do like to do the banking analogy, but it would be like I have to have a separate, because my checking account has different levels of security than my savings account does, and then my money market account is totally different, so I'm going to have to make sure, and I'm going to tell my bank, I want you to send this transaction, but not that one and this one and not that one. And that's what we're trying to ask for in healthcare. And we don't do that in

Charlie Harp (27:28):

Banking. Well, I want bank A to share all of its information about me with bank B so that bank B knows that I have a checking account with bank A. And I mean maybe they do do that. I don't know. I've been a while since I've been in the banking industry. I link

Susan Clark (27:41):

A lot of APIs, my investments,

Charlie Harp (27:44):

If somebody from the banking industry is going to yell at me and say, Charlie, we do all that. That may be true,

Susan Clark (27:49):

But oh, I just heard myself say API, which is also a term of the day, but we may be seeing later this fall, a new rule out of ASTP/ONC that will lead to the trend is going to be to get away from monolithic EHR certifications to more of an API certification. So more of a modular methodology.

Charlie Harp (28:14):

Yeah, I read about that too somewhere,

Susan Clark (28:14):

So I don't know enough to speak to it yet, but I know that's been all the rumblings. That's where we're headed, and I just say, and we've seen that having worked in state government, they've been trying to do that with Medicaid for a long time. Maybe that's a whole other topic, but trying to make system changes a lot more nimble just by only certify this piece, this piece, this piece so that you can move quicker when you want to integrate.

Charlie Harp (28:49):

Is there anything that you're particularly worried about?

Susan Clark (28:52):

With that or anything else?

Charlie Harp (28:53):

I mean just in general from a policy perspective, are there things where you think when it comes to what we're trying to do with interoperability and sharing where you think we're off or we're missing an opportunity?

Susan Clark (29:07):

I think that the first thing that I usually get worried about and why I listen to the Indiana AI Task Force or these other things, I worry about states creating more rules that don't work together, and then that becomes incredibly burdensome to manage for vendors and providers. So that's my worry. If Congress can't, going back to health IT is not sexy. It doesn't get the headlines, so that's not what they're working on all the time for laws. And if we can't get to better privacy, more flexible privacy law. There's been a lot of calls on these hearings. Even a couple of hearings ago, someone, the CMO from Epic was saying, we need to modernize our HIPAA rules so that we can do all this better, but without Congress working on privacy, security AI requirements, then there's still a need because our consumers, our patients providers are in danger from the outcomes. Then states go, Ooh, well, we need to do something if the feds aren't, and then we are at risk for either conflict of those potential laws. I

Charlie Harp (30:25):

Mean, we did a project, we worked with A PHL and we were doing notifiable conditions, and it was interesting because we were helping them support a bunch of the different state agencies doing notifiable conditions, and even that was not consistent. Every single one of them had different rules, not just about which conditions were notifiable conditions, but what they included in the list of things that fell into the value sets for those notifiable conditions. So's a lot of energy.

Susan Clark (30:53):

That just made me think, do you think banks have to deal with that? I know there are different banking laws in states, but just going back to that banking analogy of interoperability. What if I need a special consent in the state for my checking account? How much harder would your money move or how hard would it be to move your money?

Charlie Harp (31:13):

I don't know. I have to believe that when you consider how banks operate across state lines and healthcare still struggles to operate effectively across state lines. I don't know.

Susan Clark (31:22):

Maybe we need to, next podcast, let's get a banker on.

Charlie Harp (31:25):

Let's do some banker in here and grill 'em. What do you know

Susan Clark (31:30):

Or tell us what we don't

Charlie Harp (31:31):

Know, A hot light on 'em.

Susan Clark (31:32):

Tell us what we don't know about. We shouldn't go around

Charlie Harp (31:34):

Saying, are we missing something? I

Susan Clark (31:35):

Don't think we are, but

Charlie Harp (31:36):

We, what's your secret? What else do you want to talk about?

Susan Clark (31:42):

I think I've hit most of my passion points, but the adoption piece is, I'll just hit on that again, because again, when the regulations or the legislation, if it doesn't have budget for technical assistance, for training, for all of sustainable funds, so thinking of around the pandemic, when we put out a lot of public health funds, I was working with state government agencies and I remember because my Rose Glass is still on, and I would get excited and be like, we can get you money. We can make your data better and it's going to be cool, and I'm so excited. And they're like, yeah, we're not going to do that. I'm like, wait, what? And it's because they go, oh, we've seen this show before. We get dropped a whole bunch of money and then that's it. That's all we get. We can't sustain these systems. So what does the sustainable funding look like when we drop these things?

Charlie Harp (32:48):

Well, and it does as it comes down to, I remember all the grants for interoperability back in the day for HIEs and all that money was out there. But you're right, the problem with doing these things based upon a grant is it's a chunk of money. And when the money's gone, the money's gone. And if we're going to put these things in place, there's got to be either enough value to create a sustainable revenue model or there's got to be money set aside by someone somewhere that says, we get value out of you doing this, so we're going to fund you or we're going to supplement you in some way so that you can continue to do this. I think it's critically important. I think I've never been much of a grant person because I don't operate typically in that space, but it just seemed to me like it was always, it didn't feel fair to me that you get money to do something and as soon as you're successful, the money goes away. And I could just imagine the people that you have this program that's working, you have these people that you're helping or what you're doing, and when the money goes away, you're kind of in this weird situation, but it was successful. You know what I mean?

Susan Clark (33:57):

And that's why we end up going, just thinking of some of my other consulting work. It's a state wants to do this or HIE, I work a lot with HIEs and our HIE wants to advance this thing and we want to do it for the state, but the state's not going to have sustainable funding who has the funding? So that's why a lot of times they collaborate with payers or research. So if you can get clinical trials, which is, I'm not qualified to talk about privacy and security and sharing for research, but it is a place where there's some money to use. So how do we better leverage the organizations that have the money and want to see outcomes? We all want to see the same outcomes, but for different reasons. If we can get funding in multiple places, I think we call that braiding and blending in the government space, the lingo of trying to get your different funding streams to fund.

Charlie Harp (34:59):

Well, and I think that's one of the things, and I've talked to folks about this, if we can get the plumbing, if we get the data quality up to speed and we get the plumbing in place where we're moving data from point A to point B, and we can leverage that plumbing for things like biosurveillance, for public health, for things like allowing patients to opt in, because when data is moving through the plumbing, years ago, my father had a glioblastoma and I was desperate to find a clinical trial.

(35:27):

I would've loved to find him a clinical trial. And it was incredibly difficult work. Phone calls. I think it goes back to consent. I don't have a problem with looking at people's data if they consent. So if you have a patient who's going through a problem and they say, yeah, I'd love to be considered for a clinical trial, wouldn't it be nice if we had the plumbing that could just seize upon that and say, Hey, you're eligible for this trial and we have good results. Would you like to participate? I think that if we could get the plumbing right and we can get the quality to where it needs to be, we have all the parts. If we can get our act together, which should take what, three, four days?

Susan Clark (36:07):

Oh yeah.

Charlie Harp (36:08):

Optimistic. You're between your rose color glasses and my endless optimism a couple of days. We knock this out, we fix the healthcare system, then we move on to something else like cold fusion teleportation.

Susan Clark (36:23):

Exactly. I learned when I got to do a project that was really cool with now ASTP, they were still ONC at the time. At that time, they were developing a scientific advancement branch, which they've been entirely reorged.

(36:36):

But I worked on creating a strategic plan for that and I, not having a research background, got to do some really cool interviews and I learned about all of the data standards and data sets that are different. They're using OMOP and all these things that I never knew about. I'm like, and then I learned about all the learning health systems and all of these things that are happening. And I felt like the research, the health and research was so separate from regular, regular day-to-day acute or ambulatory care or some of our traditional, how do we bring them more together? Because I think we have this opportunity now with AI, but it is back to the consent and security and all that.

Charlie Harp (37:26):

Some of it, I mean, I'm the chair of the industry Partnership council of AMIA and that whole academic world and our industry world, some of it's just good old fashioned getting together and talking about what each other are doing and saying, well, that thing right there is really cool. And I think it happens, but I think it's the kind of thing that we could encourage more. And I do think that the different verticals of healthcare, having been in many of them over the years, whether you're a payer or doing research in life sciences, pharma provider, public health, a lot of the patterns, just speaking as an engineer, the patterns are the same. We might call it something different. We might deal with a different domain or subset of the data or types of data, but ultimately these patterns that we need to solve across our systems, they're the same patterns. And it'd be nice if we had better ways to consolidate and say, we can solve this problem like this. For example, the stuff that's happening with the Karen Blue button stuff, we're putting the claims data into fire just like we're using fire for clinical data. I think that's a good idea because if we can decide that for healthcare, when we exchange information, fire is the transport, not the transport, but the syntax, then it's better than having 57 different ways of doing the same pattern, I guess.

Susan Clark (38:55):

And that made me think, again, going back to the things I learned from the research industry and I was nervous going into the projects. I'm like, I've never been in research. All the problems were the same. All they would say, I really want some PDMP data. I really want some social data. And I'm like, oh, well so does everyone. Why are you trying to get it in this pathway and someone else is trying to get it in this pathway and you're all working in just was what we should all be working together.

Charlie Harp (39:28):

Well, and the idea that, I saw this in DHS, I saw this in other areas where when you go to do something with the data, it's a project. We have clients that are working with us where we try to get them to a point of data liquidity where it's not, we have a project, let's go get the data, let's make the data appropriate for the project and let's execute and then we're done. When you live in a state of data liquidity, the data's always ready. And it's always ready for whatever you want to do with it. And that way, when you need to act, you act. You don't have to say, okay, in order to act, we have to go in and make the data ready because the data's ready from the get-go. And so I think that, I dunno, you and I could probably just keep talking.

Susan Clark (40:15):

I know I was just going to give you a hallelujah Amen on that. And that might be an okay place to wrap because I'm like that. Do that. I agree with that.

Charlie Harp (40:26):

I am a fan and I appreciate you taking the time today to be on the Informonster podcast and shedding the light on a lot of this policy stuff. I'd love to have you on again.

Susan Clark (40:37):

Oh, you bet. There'll be something new tomorrow probably. That's the thing about policy. There's no end to it.

Charlie Harp (40:42):

Blink your eyes and boom. Something else. Alright, well anything else you want to add before we wrap?

Susan Clark (40:48):

No, I am ready to take you to the hill. Let's go.

Charlie Harp (40:51):

Alright, let's go. Let's lobby. Alright ladies and gentlemen, thank you so much for listening today. I'm Charlie Harp and this is

Susan Clark (40:58):

Susan Houck Clark hashtag Health It Rockstar.

Charlie Harp (41:01):

And this has been another episode of the Informonster podcast. Thank you.