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Beginning Oct. 6, medical providers must begin giving patients electronic access to more of their health care information than ever before. But the federal laws that mandate this change are fraught with enforcement problems and privacy concerns. Major industry groups include the American Medical Association and the American Hospital Association. Calling To celebrate more time.
Dan Gorenstein, host of the Health Policy Podcast TransactionsMickey Tripathi, the federal official overseeing this push to democratize America’s health information, spoke about the promise and the danger. Tripathi is the National Coordinator for Health Information Technology at the US Department of Health and Human Services.
Their speech is edited for length and clarity.
Dan Gorenstein: So Mickey, at the very top, why is October 6th a big day?
Mickey Tripathi: October 6th is a big day because we’re saying that if the information is electronically accessible – meaning it’s on a computer system somewhere in your hospital – you’re required to make it available electronically. Patients deserve more healthcare information, right? That is the basic premise. We are saying it is electronic. It’s out there digitally. So make it available.
Gorenstein: What can a patient do on October 6 that they can’t do on October 5?
Tripathi: Yeah, so it varies a lot, but in theory, as of October 6th, what a patient has to offer or what they have, you know, your first name, your last name, your address, your allergies. So for example, you start seeing whole sets of notes – nursing notes or surgical notes from my last surgery or some images from my last picture – these are starting to come to you electronically.
Gorenstein: Just a quick housekeeping question, Mickey. Already on October 5th, patients have the right to say, “You have to share my data with me,” right?
Tripathi: Yes, you can go to that hospital today and [demand all of your records] And what they say is, “Okay, your patient portal has a whole set, and then for the rest of it, we’ll give you a paper copy. You can get this little straw, but so what [you] His desire is all the river. [of your electronic health information].
Gorenstein: The difference between October 5th and 6th is now I get a big straw. It’s the big Gulp straw.
Tripathi: Yes, that’s the concept and that’s what we’re trying to get at and the reason I added that is that we’re starting to get into areas where data is not standardized and cluttered.
Gorenstein: How?
Tripathi: We’ve made a choice to say, we can’t wait until all these data elements are defined cleanly and crisply, so they fit the bill. So you can get from one hospital, another format from another hospital. And now we’re saying it’s good. We have to live with this for now. The key is to make it available.
Gorenstein: This sounds like a very laissez faire approach from the federal government Mickey. Why not be prescriptive, tell hospitals how you want this information to be framed to make sure it’s useful to people?
Tripathi: If we decide that more regulation is needed to make that happen on an ongoing basis, those are the kinds of things we always think about. But we still don’t want to jump into very dynamic areas, so we don’t want to overcontrol. As the federal government, we can find it precisely wrong in many ways, right? And the reversal of that is, “Oh, well, you’ve introduced the floppy disk 3.5 standard in an industry that jumped ahead to fiber optics.” So let’s be careful here and find out what the market is doing and then how we intervene.
Gorenstein: What about hospitals? What does October 6 mean for them as systems, these behemoths with big back office operations?
Tripathi: Yeah, I mean, it’s definitely more complicated. That’s the first thing they should do. [ask] Where is all this patient information? And so when Dan comes knocking and asks for that information, how do I move it as real-time as possible?
And this is not an easy problem to figure out because in the hospital we tend to think about the electronic health record system, Epic, Cerner, whatever. But hospital systems have a lot of ancillary systems — chemo dosing, cardiology, anesthesia systems — that could be 10 years, 15 years. Those systems are never designed to say, “Oh, we’ve got a query from Daniel. We need to immediately go and get the data, aggregate it with the other data and present it to Daniel’s portal in real time. So with all these policies, skills and work processes in mind [is] Complex. We appreciate that it’s complicated.
Gorenstein: Mickey, what kind of game signals are you looking for from health systems? If a hospital wants to circumvent the true intent of this law, how can it do so? And I ask that question because we’ve seen other data laws, like hospital price transparency, and we’ve seen health systems struggle to comply.
Tripathi: It’s a valid question. My office has identified eight exceptions that allow a carrier to say, “Okay, I know I have to make this information available. However, I can’t for one or more of these eight reasons. One is privacy. Another could be that you can’t deliver to them electronically – what we call viability. So there’s definitely a chance that people will interpret things, you know, maybe more broadly than you think.
Gorenstein: And what’s the stick you have to hit them back with?
Tripathi: What is the stick relative to the stick? Well, it’s complicated. The fact of the matter is that we are not monitoring this in real time. We don’t have a separate police force. on the other hand, [my office]The office of the national coordinator Portal Where you are allowed to submit complaints. And we will take those complaints and do an initial investigation and send them to the Office of the Inspector General who is responsible for enforcement.
Gorenstein: If these efforts fail, what is the stake here?
Tripathi: I mean, the downside is that you’re at the point where you need care and information that’s critical to the doctor on the ground isn’t available to them. Emergency department presentation and adherence to penicillin when allergic to penicillin. Now, how do you know this? They ask you. Well, what if you’re in a traumatic situation? What if you are elderly? We never know when we’ll be in a situation where a clinic doesn’t know everything about us and they’re making decisions on the fly because they have to go with the best information they have.
Gorenstein: So this Oct. 6 change is the final chapter in a huge push over the past decade by the federal government and industry to make better use of our health care data.
Mickey, can you walk us through this trip? Where have we been, where are we now and where are we going?
Tripathi: Well, if you think about this 10-year journey that you described, in 2010, as a country – as a taxpayer – we invested around 30 to 40 billion dollars and moved the entire system from paper to electronic. A remarkable achievement in a relatively short period of time. That’s what we’ve done over the last 10 years, let’s just put electronic health records out there for everyone and create this digital foundation. But now we have the opportunity to create what we call an open ecosystem, where information flows on demand and systems become more interactive than they are today.
Gorenstein: On the one hand here, Mickey, you’re giving patients easy access to their information, but at the same time, at least in theory, you’re opening the door to privacy and security questions.
How is your team thinking about those types of risks and trying to mitigate them?
Tripathi: Those are very real risks. So the first thing I would say is that patients need to be incredibly diligent about the applications they use for their healthcare information, especially those who access their data. Instead of doing what you and I do when we download an app, user agreement, click, click, click, click. Please just take me to the condemned app. You know, you can do it for all your other stuff, right? Don’t do it for your money. But definitely don’t do it for your health information.
Herein lies the problem. Once data leaves HIPAA’s boundaries, unfortunately, it doesn’t have the protections that people think it has. They don’t realize that HIPAA only deals with information in the hands of certain organizations like health insurance, hospitals, doctors. But the minute it goes into an app, it no longer has those protections.
Gorenstein: So you’re basically saying here, Mickey, that the main federal law that protects patients’ health care information, HIPAA, doesn’t apply if a patient, for example, blows a user agreement for some third-party app. And he didn’t realize they gave the green light to sell all their health data. They are out of luck. Are you guys doing anything else to protect people?
Tripathi: So what we’re trying to do is to convince everybody of the importance of educating patients first because we’re out of balance here, right? Well, you don’t want to say, “We don’t give information to patients.” We want to be able to say that we’re giving patients information because we think they’ll be in a better position to take a more active role in their own care and benefit from it. But that benefit comes with certain risks and those risks must be understood, and there is an obligation on the part of providers and others to educate patients about it.
Gorenstein: But Mickey, this could be dangerous for patients.
Tripathi: So it’s not just health care information. It is like any other information. We have to accept that patients are very, very, very diligent and need to know that the information is now in a different state. And they are primarily responsible for making sure they don’t get into apps they don’t trust.
One of the things I think we need to realize here is that people can make assumptions about your health without information that isn’t in your electronic health record. Let’s say I wake up with back pain, I reach in, pick up my Google Pixel, search, you know, back strain and the next day, make an appointment with your provider. My Google Pixel phone knows all of these, right? So you get my point. Not to scare you, but we all need to know that there is a lot more information that people can comment on than we appreciate, and your health is part of that.
Gorenstein: Too late, Mickey. We are scared.
Tripathi: Don’t be afraid. Be diligent.
This story comes from the Health Policy Podcast. Transactionspartner of Side effects of public media. Dan Gorenstein is the executive editor of Run Business. This story On October 6.
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