Today in health, it we're going to take a look at the 21st century cures act version 2.0. Which is being batted around right now. Going to tell you what I think should be in it. My name is bill Russell. I'm a former CIO for a 16 hospital system and creator of this weak health set of channels and events dedicated to transform healthcare. One connection at a time today's show is brought to you by Panda health.

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So this is an article from Politico, Washington, once in cures, 2.0, we're going to take a look at what. First of all, how laws are made. And it's convoluted and crazy. And I don't know. It just is crazy how laws are made and essentially they say, Hey, we're thinking about cures 2.0, give us your ideas. Everybody and their brother comes in asking for stuff and then they try to incorporate things and then it goes through that process.

And that process I'm sure. If it was public would be really. Ugly and a scintillating TV, but we would be horrified with what we saw and, you see some of that Aaron Sorkin did a great job in the west wing, capturing some of that. Along the way. So let's take a look at some of the experts at coalition of health care industry groups.

That put together. The, and actually I love this statement. They wrote unlocking the power of health data, holds the promise to improve health outcomes for patients. Yes. And families, yes. Reduce the burden to clinicians and other providers. Absolutely less than costs for businesses and taxpayers. And target cures. All right.

Yeah. That's what it's about. So then we go into what people are asking for the American society for microbiology call for a national testing and response strategy for pandemic and support. Pandemics and support for wastewater surveillance programs.

Okay. I, again, Now we're talking about something a little different. National health council, which represents patient groups, their partners and firms across the industry call for more pathways for CMS coverage for new medical devices. Okay. That falls under advices, FDA process, potentially. A farmer call for lawmakers to reauthorize the pandemic and all hazards preparedness act. Which expired last year. Which I'm not sure why that would be associated with this, if it makes sense. It to be brought forward.

It should American telemedicine association, once the provisions. For telehealth access and Medicare to be made permanent. Again, I'm not sure why that has to be included here, but it's a definitely something that should be considered you also. Advocated for federal standard on artificial intelligence.

And now you're just getting off the beaten path. Not that we don't need federal standards for artificial intelligence, that Allison's patients PR protections, data, accountability, and promoting innovation, avoids a patchwork of state laws. I guess I understand where they're going there. I'm just not sure it fits under this bucket. Maybe it does.

I could see it fitting under the data side of it. But man, if you start going into the artificial intelligence route, now, the sky's the limit in terms of where it can go. Chime also weighs in here once the support for providers not eligible for incentives. So there are providers out there that currently don't fall under certain categories, so they were not given. Meaningful use dollars for going to an EHR.

They would like that to happen. I'd have to think about whether. I think that's part of this or not. Not that it's a bad thing. It's just. If you expand this. So widely cures, 2.0, loses the 21st century cures act loses its focus. And I think that's one of the things that made it a good. Law. And the reason it was so bipartisan. The group was also concerned about the lack of clarity and data governance. Oh, and they talked about the whole Integrity and epic thing where essentially through the HIE integrity markets, access to the records, they bring in all the information. But integrity. It's business. Is to help people with lawsuits against the people who created the record. And so it was a way of bypassing let's say the normal legal proceedings of a request for information, getting that information through legal means they were actually getting it through interrogatory, which was using the HIE mechanism to. Gather that information epic said it violated. The the spirit of the HIV and they cut them off. And what what chime is calling for is clarity in data governance and a clarity in those rules in terms of data sharing. Again, not bad things, they're just things. So I guess that's how the federal government works.

Like when they're ready to do a law, Hey, tell us all the things you want. They all come in and then they essentially fill up the shopping cart and. The 600 page law and get it past. I think that's how it works. A little cynical here, but I think that is essentially how it works. Here's what I'd like to see in it.

Again, going back to its original focus. Which was speed up the FDA approval process, improve health, data sharing, and boost research.

Again I believe the thing that would help the most. Would be a law and in this could be curious, 2.0. A law that essentially changes this state run idea of who owns the medical record. Right now. The health systems own the medical record. Period. End of discussion. I think a medical record based on the patient should be owned by the patient. I understand that in no other industry, do we force the creator of the record to get, to essentially give the entire record? To the individual that it's about, but I think in healthcare, it's just a different case. Because we're talking about the health of that individual and it can be used in a powerful way by that individual to further their health.

And I know a lot of people disagree on this because they're like, what would they do with the medical record? I think if you pass something at the federal level, And every individual now had the access to their medical record in a, through all the mechanisms that we're creating right now, but they essentially had the ability to download that onto their phone. And then any time they presented in a health system, That they could just barcode read it, have the entire medical record there at the point of care. And quite frankly, also when I leave. Boom.

All the information is downloaded to that medical record. And I go elsewhere. Now I could find. Medical fiduciaries, if you will. It's a term that was given to me a while back, but medical fiduciaries would pop up people that were, would essentially come alongside and say, I, we can help you to live a healthier life. And part of that is you sharing portions of your medical record with them and then providing you feedback and then providing you help along the way. So there's medical fiduciaries would pop up.

Now people are concerned, oh, people don't know what to do with the information, or people might give it to the wrong people. Let's be honest here, people, then the amount of breaches we've had this year, we've already given it away. So why don't we just give it to the people that it would do the most good for? And I, a lot of times when I talk about this, people give me pushback. And then we'll say, Hey. I don't know what you're talking about.

The person does have access to the medical record, not by law. They don't. And not the complete medical record. They have access to whatever. Portion of the medical record that each health system decides to share with them. And what I'm saying is I want it all. And, w we had this argument over open notes a while back, like if we do open notes, will that change?

How a physician. Writes things into the medical record and it did. And in a lot of cases, that was for the better. In other cases it caused very dynamic conversations. What do you mean I'm obese? Your, the clinical definition of obese. Which is dah. Dah. It's just it caused some challenging conversations, but it's through those conversations that we get healthier. I believe in cures 2.0 the next step for cures 2.0. Is too. Federally designate the medical record on an individual to be owned by the patient. That it will be transferred or ConEd by the patient.

It will be transferred to the patient. Upon discharge and they can do with their medical record, whatever they deem is necessary for that medical record. And we trust individuals with that medical record. I think that would create a whole new dynamic of how data could be used in healthcare. I think you, you would have pharma going directly to patients asking for information.

I would, I could benefit from providing my information to pharma. I could benefit from providing it to research institutions and those kinds of things. So that's what I would like to see in cures 2.0. I agree with me, disagree with me. I'm curious. I think a lot of people think that the patient does own the medical record.

They do not. And then it's arduous to collect your entire medical record even today. With the amount of market share that epic has and is really arduous to this day to collect your entire medical record. We'll see, that's what I'm hopeful for. We'll see if that comes to pass. I don't know. I th no, one's fighting for the patient in this thing.

I'm looking at this thing. No, one's fighting for the patient. Or asking for the patient? Something, I think cures two point are curious 1.0, had the patient. In mind, it was really well-written towards helping the patient. Bye. By providing data and utilizing data for the patients. Good. I think this one is a, I think it's a shopping cart and I hope that somebody gets ahold of it and directs it. We'll see that's all for today.

And that's my opinion. But that's all for today. If you have a different opinion, let me know. Don't forget show this bike house with a friend or colleague. You said as a foundation for keeping the conversation going.

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