This Week Health

Today: Transitioning to Patient-Owned Data

Great article from Dustin Hufford, CIO of Cooper Health on Patient Centered Interoperability.

Transcript

Today, transitioning to patient owned data. One of my hot topics. Topic. I love to talk about my name is bill Russell. I'm a former CIO for a 16 hospital system and create, or this week health. So the channel is dedicated to keeping health, it staff current and engaged. We want to thank our show sponsors who are investing in developing the next generation of health leaders.

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All right. Today's article comes from health tech magazine. And it is written by Dustin Hufford, H U F F O R D S VP and CIO Cooper university healthcare. And this is a great article and it touches on a topic. As I said earlier. That is near and dear to my heart. , let me give you some excerpts. Healthcare's primary problem is not a lack of data, but a lack of fidelity and usability of the available data. The challenge in the challenge is correlating, interpreting and distilling data.

To a usable state and getting these data to the right person at the right time. Additionally, healthcare data is unwieldy. And fractured, continuing to fracture exponentially as more care channels and options emerged, new channels, generate new data silos and make safe, effective care, difficult. Compounding this issue costs of care.

, cost of health insurance care delivery and medications continue to rise. Placing. Adequate health care out of reach for many as a result, the quality of care across the us continues to lag significantly behind other countries. He also talks about a us healthcare is experiencing. An unprecedented period.

A change. Brought on by industry pressures, which makes an already complex. Complex system where cumbersome and perilous. These pressures include dramatic shifts in consumer expectations, fragmentation increased regulatory pressures and hyper specialization of knowledge about disease. As, , our knowledge of disease accelerates.

Okay. And he goes on to talk about the problem. Data is duplicated and conflicting due to issues with standards. Because most healthcare records do not consolidate information, numerous patient and provider. Reported health records result in duplication retention and outdated information and leave room for error. Also payer data often and accurately reflects patient care.

And services provided due to the complicated nature of the billing practices often to ease workflow, patient services. Our build based on a shortlist of memorized codes. Or the first code to populate a search resulting in loss of fidelity. Therefore providers don't uniformly have access to accurate reference records.

Which creates an overwhelming burden on providers trying to find information needed. To make recommendations. Okay. So data is duplicated and conflicting due to issues with standards. Projects to enable interoperability are costly and time consuming. I'm going to skip that one. Cause we know that one.

, patient is never in control of their data. Let me give you some of the excerpts from this patients. Are the reason healthcare exists and yet they are rarely centered in their information or care. Wow. That's a, that's a huge statement. Patients are the reason healthcare exists, and yet they're rarely centered in their information.

Or care. That is a, that's an indictment on healthcare. If the patients are the center. We should be designing everything, all of our systems to empower those patients. And, you know, it reminds me one of the biggest problems we have in healthcare is the arrogance of healthcare. What I call the arrogance health care. I think it's a.

An epidemic throughout it is. The COVID of healthcare amongst healthcare providers and it's, it's arrogance, it's pride and arrogance. And let me give you the example that I give people. , and it is, you know, father and a four year old, four year old comes to the father and says, can I help with that project at, I want to, I want to help, you know, to build something or whatever.

And the dad says, no, you're not old enough. You're not big enough. You're not strong enough. You don't have enough knowledge. You can't handle a hammer, you know, you can't do that. You know, fast forward a couple years. And the father's like, , you know, my son's worthless. He's not engaged is not a power and he doesn't do anything. Did it, , you know, you get the picture.

, healthcare, we do that with patients all the time. They come to us and said, I did my research on web MD. I have all this data from consumer electronic devices and, and I have all this stuff and we say all of that's worthless. In fact, I watched the podcast just the other day on consumer wearable data and it was doctor talking and he essentially said that data is worthless.

And I thought that's what the father does to the four year old. And we do the patients all the time. We looked at them and say, yeah, thanks for trying to help in your, in your, , , in your health, forget it. Stop trying to help. You don't know what you're doing. Just trust me, just come in. And then we complain a little later on because they are not engaged in their healthcare.

And so that is a cultural issue that must be addressed. We have to engage the patients. And that's what this first sentence is about. Patients are the reason healthcare exists. Full stop. And yet they're rarely centered in their information or care. I'll go on. They have little control of their data and in most cases have no concept of how the data is used and where it is shared.

And boy, isn't that true? , I mean the number when I came in and we finally did an audit of where our data was going, , it was being monetized. It was going places. And, , it was interesting because people in the health system in general would say, oh no, we weren't monetizing the data, but we absolutely were. We were doing it through third parties.

We didn't know we were monetizing the data, but that is actually what was happening. Also all too often patient provided information. Fails to be integrated with the patient's record, thereby ignoring critical pieces of information by ignoring the patient's. The patient as a vital part of healthcare and its interoperability, data sharing and cleansing become more complex and diminishes the capabilities of healthcare providers to make data-based diagnoses and treatment decisions.

It's interesting. I've often said that the patient is the best data steward. We have data stewards throughout our health system that are trying to apply data standards and match data and do all sorts of things. And the reality is the patient is the best data steward. They can look at their record and almost immediately look at it and go.

I never lived there. My last name is not that, but you know, they can. They can clean up the data faster. Then most of the people you hired to do it anyway. What can and should be done. We should strive for a single golden record for every single person on earth that is updated in real time and changes.

As changes happen and allows for notification of significant events to be delivered to the right person at the right time. And that record should be owned by the individual, not the system. And that is the key. That's the crux of it. I can tell you why it hasn't happened. It hasn't happened because, , there's, there's no money in it for health systems. That's number one. And by the way, there's no money in it for the entrepreneurs to build it.

Right. There's no ecosystem. There's no. There's no, , there's no economic model that has, , organized around the individual owning their medical record. If either one of those things were to happen. If there was a financial incentive for the health system to have the patient own the record, or if there was an economic model that would emerge around the patient, owning their record.

, then I think it would happen quickly. And, you know, what kind of economic model could emerge around the patient, owning their data? Well, think of it this way. , you know, I don't know anything about plumbing, but the plumbing works in my house. I don't know anything about electricity, but the electricity works in my house. And it's the ability for fiduciaries to emerge that are going to help me with my medical record. They're going to look at it and say, let me scan your medical record.

And yes, there is the opportunity for us to be duped. Stop. He is. For the most part, I would say to people just stop. Caring for me to the point of not caring for me. It's, you know, I care for you so much. I can't give you the data. You know, I care for me enough to give me the data and then care for me enough to coach me on how to use the data.

Not keep the data from me so that I can't hurt myself. , which is by the way, just the silly don't care for me to the point of not caring for me. , Anyway. So give me the record. And then I think a community will start to form around that where I can go to various entities and say, help me with this role. I want to lose weight, help me with this record. I want to determine what the best place for me to live, , for my family to have a great healthcare.

I want to determine, you know, all those things. And, , I think we could have something emerge for that. I. You know, I'd have to think a little bit more about it to see what the economic model is. All right, let me, I'm running out of time here. There've been many barriers to this in the past, most significant challenges have been to uniquely identify each person and all the entities and assets that interact.

Luckily technologies and tools emerging in the market can now systemically. Systematically address these issues through AI and machine learning. By the way we were, we were doing this. I don't know, back in 2015. So these, these methods are 7, 7, 8 years old. , in terms of being able to do this without a unique patient identifier, I think we hide behind the unique patient identifier, which is going to take a decade or so.

, and also it's just not necessary. , we have the tools, we've been doing this in financial services for years, and we've been quite frankly, we were doing it in healthcare eight years ago. , with at least three nines of now four nines, , accuracy. When emergency. , That's saying the same thing. In addition to focusing on rich medical data, the company continuously fills gaps in real time, real world.

, data from multiple sources, EG wearables, medical devices in conjunction with social determinants of health and patient reported information. In other words, we can get a whole person profile, a complete profile if we don't try to hold it as the health system, if we allow the record to be built around the patient and then the patient can determine who they're going to share it with.

Including the house with some quite frankly, how do we get here? This is the million dollar question, just a short paragraph. So you're going to be disappointed. , let's see what it has say. While companies like this. Are working to solve this problem. There are cultural batter barriers in the U S that need to be overcome.

To truly achieve patient owned, interoperability data hoarding and profiteering concepts need to be addressed. And if you don't think that exists, The largest companies I've seen that have emerged with valuations. In the past three years in healthcare have all been around data about taking healthcare data from consolidate systems systems that have agreed to work together and then selling that data off in an anonymized. We do an air quotes all the time, anonymized fashion to, , pharma and other things that require that data.

And, , you know, we see it over and over again. That is an untapped. , potential for health systems and they're now tapping into it and selling it so that we are profiteering and we are data hoarding because there's value in there. And that data, as we say. , Data is the new oil is the new gold. As you say.

Healthcare needs to be democratized for more equitable landscape platforms that democratize health information shift people. From passive to active participants, which is what I talked about earlier. , within their own health outcomes after all it is ultimately the patient that bears the burden. I've adverse health outcomes, not the providers. So again, hot topic for me. I would love to see an, a company, , come up that does this and makes us a reality Patriot patient centric, interoperability.

Inter-operability. , around the medical record, being aggregated to the only person who is present at the point of care in every case, which is the patient. All right. That's all for today. If you know someone that might benefit from our channel for them to know it does help us significantly. So just writing that email and saying, Hey, I'm listening to this week. Health love for you to listen to it so we can talk about it.

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Thanks for listening. That's all for now.

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