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I may not own my patient record legally, but I want joint custody. I want to be able to decide who has it, where it is stored, who can use it on my behalf and who can sell it, anonymized or not. Am I being unreasonable?

National Patient ID is another step away from this IMHO. Don't worry your little head, we will take care of your medical record for you.

FTA

Patient ID Now, a coalition of more than 40 healthcare organizations, released a framework this week aimed at creating a national strategy around patient identification that protects individual safety and security.

In the framework, the coalition calls on the federal government to closely collaborate with the private sector and with other public health authorities in working toward the goal of accurate patient identification. 

"The framework lays the foundation for a national strategy that saves lives, while protecting a patient's choice and privacy rights," Wolf added.

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Why would I question the wisdom of the masses? Security, Choice, Privacy and if that weren't enough because a bad working premise leads to bad solutions.

I'm the only constant at the point of care. Me, the patient. Why don't you trust me to handle my medical record.

#healthcare #privacy #healthIT #CIO #CMIO #CHIME #HIMSS

Transcript

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

  Today in Health it, this story is solving the patient ID problem once and for all. My name is Bill Russell. I'm a former CIO for a 16 hospital system and creator of this week in Health IT a channel dedicated to keeping health IT staff current and engaged. I wanna thank our sponsor for today's series Healthcare.

They reached out about this time last year and they loved what we were doing with the show and our mission to develop the next generation of health leaders. The rest is history, as they say. If you believe in our mission and wanna support our show as well, please shoot me a note at partner at this week, health it.com.

Alright, here's today's story. Sometimes when you grow up inside the healthcare community, you get stuck thinking of ways to solve a problem based on a healthcare community lens. Everything is viewed from what is, what has been and what always will be. But what if there was another way? What if the other way made sense for everyone that relied on healthcare but was not necessarily in the best interest of everyone in healthcare?

What if the technology existed? The framework was simple, and the gnarly problems had already been solved. Would it be considered? Today's story is about national patient ID coalition, a group whose fundamental premise is wrong from the start because it is based on what has been and what is perceived to be the best premise for a framework.

I'm gonna present a little later what I think is the best approach to this problem. But before that, I want to get into the article a little bit. So the article comes from healthcare IT news, patient id. Now coalition releases national strategic Framework for identity matching. Patient id. Now a coalition of more than 40 healthcare organizations released a framework this week aimed at creating a national strategy around patient identification that protects individual safety and security in the framework.

The coalition calls on the federal government to closely collaborate. With the private sector and with other public health authorities in working toward the goal of accurate patient identification throughout the past year. COVID-19 pandemic has highlighted the urgent need to address the issue of patient identification.

The inability to accurately match patients with their records has severe patient safety and financial implications and impede health information exchange. Said Hal Wolf, president and CEO. Of healthcare IT news, parent company, HIMSS in a statement. Never let a good crisis go to waste. The framework lays the foundation for a national strategy that saves lives while protecting a patient's choice and privacy rights.

Well said. No consistent and accurate way exists to link patients to their health. Information leading to safety. Risks, security consequences and financial burdens. This has become a particularly fraught issue. During the COVID-19 vaccine rollout efforts, hospitals and health systems have reported duplicate records costing thousands of dollars to rectify and mistakes in administrative data.

I don't know about you, but I got mine from the public health department. I got a little card, so I don't know what we're talking about in terms of . The vaccine rollout causing any of this. Over the past year, the Covid to 19 pandemic has highlighted the need to address patient misidentification throughout the health system, said Ahima, CEO, CIA WIGS Harris, in a statement, accurate identification of patients is one of the most difficult operational issues during a public health emergency.

And the nationwide response to the pandemic, including the rollout of the vaccination programs, has highlighted the repercussions of not having a nationwide strategy to connect patients with their data. Harris added, I'll get back to that in a minute. The framework addressed several main components of a national strategy, accurate identification, and match rates, privacy, security.

Standardization, portability and interoperability. Data quality, integration with current systems, equity and inclusion and sustainability, and governments. Among other, the coalition's recommendations for a national strategy include providing guidance and standards on the calculation of error rates across health IT systems and organizations.

Number two, identifying minimum acceptable levels of accuracy. Number three, leveraging public and private sector resources to address. Patient privacy. Number four. Defining the minimum standardized dataset needed for patient identification and matching release of this framework for a national strategy on patient identity is an important step forward toward an effective national strategy on patient identification.

This essential but missing functionality would add significantly to provider's ability to manage care safely. And if it were in place, it would assist in effectively battling the coronavirus, said Intermountain Chief Information Officer Ryan Smith, who I highly respect and really like, but I'm gonna disagree with in this case, I'm gonna disagree with.

All right. What could possibly be wrong in addressing patient matching in a health system? Nothing. Nothing really, and this isn't a hard problem to solve within the health system. People, process and technology. The, the old pat answer to problems, right? The technology has been around for decades and it's only getting better.

We used to initiate where I was a CIO it found potential matches during the admissions process. It, it warned the entry staff several times and, and if they overrode it incorrectly, it triggered a training event. So their manager, their direct supervisor, would notice that there was an event that was triggered because this person overrode multiple warnings, that they were about to create a duplicate record people process and technology.

If you have duplicates within your own health system, solve this basic problem. It can lead to serious issues. I'm not arguing that in any way, shape, or form, but it has been solved. It can be solved. The duplicate rates should be well below 1%. There are cases where it can happen, but it should be really low.

What I'm going to address is a national patient id, a national strategy for linking all medical records about me for the benefit of me supposedly, and in the best interest of care, my care, I guess, but also public health, a complete longitudinal patient record. This thinking is so ingrained in our psyche and healthcare that we don't even consider.

There can be another way. We need a complete longitudinal patient record. How do we match all the records we have within our health system and beyond our four walls with other health systems? We talk about diversity of thought, but this is a case where groupthink has taken hold. How do we solve this problem linking all the medical records we already have?

I'm gonna ask you to step back for a second. Take a broader view of this problem. Consider it from a patient perspective. Pretend I'm a patient speaking to you right now. Pretend that you care even in the slightest about what I'm about to say. Put down your righteous indignation that someone might suggest that what healthcare is doing is not in the best interest of the patient, but rather its own interest and consider an alternative for just one second, I'm gonna start with why national patient ID is really the wrong approach, and then I'm going to present an alternative first.

It's the wrong model. The locus of any medical record matching should be with the patient, not the health system. Let me say this another way. Any strategy, technology, or framework should be centered on the patient's interest and not the health system. I. Why would a patient be against this? Well, I don't know.

Let's consider maybe four reasons. Number one, healthcare has proven to be the Mayberry jail of protecting my health record. No offense, but the wall of shame. And my countless credit protection letters from health systems would indicate I. That every other industry is better at protecting information than healthcare.

A national patient ID would benefit the hackers more than the healthcare providers. Let's make it easier for them to get every piece of my personal data. That's the first one. Number two, healthcare has decided to monetize my record. Anonymized, of course, but selling my data without my consent.

Nonetheless, Truda is the latest example of this, and before then there was Explorers and IBM number three, the doctors don't read the entire record anyway. They barely read any of the record. One doctor told me that she didn't rely on any of the information in the EMR and started each visit with her proven method of asking questions and focusing on the immediate, which would inform how much of the record she might consider looking at.

We know that redundant tests lead to 768 billion in additional costs in healthcare, and this might just be one of the reasons, and by the way, it's what we experience as patients. We go in and we get asked the same questions over and over and over again. Finally, the A CLU doesn't like the idea. I wonder why the A CLU doesn't like the idea.

Perhaps they know that it could be used for . Nefarious purposes by nefarious actors. I just like using the word nefarious. Perhaps they recognize that without a patient bill of rights around our data, that allows us to choose if our medical record is forgotten or taken out of the EHR from the health system that has been briefed several times that the individual is being hung out to dry.

My medical record is sacred information about me. I may not own it legally, but I want joint custody. I want to be able to decide who has it. Where it is stored, who can use it on my behalf and who can sell it anonymized or not? I know what you're saying right now. Okay. Smart guy. What's your plan? How would you solve this?

One more thing for contacts. Every solution has a set of problems, period. Right? I remember when I introduced moving to the cloud to my health system, IT staff, and they spent the better part of a half hour telling me all the problems with moving to the cloud. I dutifully wrote down the problems because they were important.

When everyone was done, I said, I agree with you, but the outcome of moving to the cloud gets our health system closer to our objective and our mission, so we choose to solve those problems. When the outcome gets us closer to a better solution for those that you are aiming to serve, you choose to solve the problems to get there, instead of defending the status quo.

Alright, here's the solution. The patient. As the locus of the medical record today, it is assumed that the locus of the medical record is as it should be with the healthcare system. The problem is they're competing healthcare systems. How silly is that? It's like wanting a universal account of my spending to be provided by Walmart, target, Amazon, and Macy's.

Can you all work together to create a system for me to get all my purchases in one place? Ah, but healthcare doesn't think like that, right? They're not competition like, like Macy's, Amazon, target, and Walmart. I will agree with you that many healthcare practitioners would never think like that. But healthcare administrators do.

Number two. What does this look like? I'm the locust of my medical record because I am the only constant at the point of care. Me, the patient, every time I receive care, I am there. I receive the care, and you know what I'd like. I'd like every time I receive care that you give me my entire medical record when I leave.

I should carry my medical record out the door with me electronically for sure, but if not in paper form all of it. While you're at it, I should be given the option to have you delete the record from your health system EHR. I may trust you as a doctor. I may trust everyone I saw within the health system, but I may not trust your IT department to protect my information.

Do we make people store money in banks with a history of losing their money? No, we wouldn't do that. We shouldn't require them to keep their medical record in a place where they don't feel like it's safe. Wait, how does that address national patient id? Well, there are any number of ways to identify a patient on their phone.

The phone number, the apple id, the the phone ID touch, ID face, ID look. We're using biometrics to identify the patient. If the medical record is stored on the phone or in a hipaa, high-trust certified cloud location with verifiable practices, extensive background checks, full suite of backup and disaster recovery services and data privacy capabilities, and sharing frameworks, we would all be better off.

Think about this, we've had hospitals lose massive amounts of data through this ransomware. I mean, they lost all the medical records, all the medical images that were ever taken at a health system. Think about that for a second. Okay? I want my medical record because you know what, if that happens at my hospital, I still need my medical records.

I need my images, I need my history. I. Think about the benefits of this. Now, every person is a steward of their own me medical record. Who knows what should be in the medical record more than the individual? Hey, what's your last address? Hey, there's six addresses in here. That's great, but this is the most current one.

Who's best able to identify that? Well, it's the patient. I don't think they should change the medical record or have the ability to change the medical record. It should almost be a blockchain type thing where it's an immutable record, right? So we, we know that when it's been passed to the patient and if any changes and what changes have been made, but there are those that will struggle with the patient being the steward of their medical record.

I can hear Judy already, they don't know what to do with it, which is from that famous exchange with Joe Biden. Others will say, what about people without a phone? What about those who present in a compromised state? They are unconscious. These are great questions. My response to that is great. Let's solve those problems.

The unconscious state problem we solved a long time ago in healthcare, it's called Break the glass. People without a phone, give them a phone, or at least some free cloud storage. It's cheaper than anything we're gonna come up with anyway. We don't know what to do with it. That is the age old thing. What?

What are you gonna do with your health record if I give it to you? Well. You know, I think what's gonna happen is smart companies will deploy doctors and practitioners to help me make sense of my record. It's a form of accountability to the health system. When you think about it, it's a second opinion Built in an ecosystem will arise.

It always does. This is what happens in a free market economy. I. But what about public health and research? They will suffer without the medical records from health systems. This stems from a small view of the patient. Do you really think that patients won't contribute their medical record to science? Do you think that heart studies will struggle to get data if we have to rely on patients to provide it?

Quite frankly, if you create a system where they get paid to participate, you may have too many willing participants. If pharmaceuticals were creative, it would cost them less and the benefits would accrue to the person whose information they are using the patient as the locus of the medical record. I know it's crazy talk.

Someone asked me, if you were a healthcare CIO, would you still be pursuing this? The answer is yes. The reason is because the Sisters of St. Joseph drilled into my head over and over the importance of Mission . We do what is in the best interest of the patient and the community. We started this hospital to serve the community and nothing has changed.

So as a CIO, several years ago, we helped startups with this vision, with this mission. At its core, we supported early information sharing and interoperability efforts, and we never thought of the patient data as something we owned and controlled, but as something we were really a steward of on their behalf.

I know this is a little long and I thank you for hanging in there. Uh, just thought it would be fun to stretch your thinking today. Perhaps you are in a position of influence where you can move this concept forward. I'm personally against the national patient ID and I realize I'm in the minority. Thus is the nature of swimming upstream.

But if it is upstream to put the patient at the center of our models, then I hope I'm not in a minority for long. That's all for today. If you know of someone that might benefit from our channel, please forward them a note. They subscribe on our website this week, health.com, or wherever you listen to podcasts.

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