Who Will be the Tom Hanks Actor of Healthcare
This week I am talking to Elizabeth Delahoussaye, The Chief Privacy Officer at Ciox (@cioxhealth). Elizabeth is an expert in health information management aka as Medical Records.
We dive into the history of healthcare information and track back to the HiTech Act from 2009 and the journey from there through enforcement, guidance, and ultimately imposition of fines for enforcement. Progress was slow with each of these stages and steps taking years to come to full fruition.
As I mention in the discussion I carried around the memo from the Office of Civil Rights (OCR) – actually from 2013 that was my goto resource in obtaining access to my medical record
But as we discuss the new regulatory requirements related to the 21st Century Cures Act has defined actors (yes we were both a little confused when we first heard that term), which includes everyone participating in the electronic health record and importantly includes the technology vendors. And all are now subject to penalties of up to $1 million per violation should they interfere with the exchange of electronic health information.
That’s all good news but there are still enforcement details to be published and challenges abound. Listen in to hear all about Actors in healthcare, the development of the interstate highway for healthcare information, and who and how you get this freeway connected with a major interstate, as opposed to just the back roads that we currently have
Who will lead and be Tom Hanks (good actor) and who will be the bad actor (Terminator) of data interoperability
Your chance now to is lead and build sharing into your healthcare solutions and services
Listen live at 4:00 AM, 12:00 Noon, or 8:00 PM ET, Monday through Friday for the next week at HealthcareNOW Radio. After that, you can listen on demand (See podcast information below.) Join the conversation on Twitter at #TheIncrementalist.
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Raw Transcript
Nick van Terheyden
And today, I’m delighted to be joined by Elizabeth Delahoussaye. She is the Chief Privacy Officer of Sox. Elizabeth, thanks for joining me today.
Elizabeth Delahoussaye
Thanks, Dr. Nick, I appreciate the invite, I’m excited to be on this podcast.
Nick van Terheyden
So as we do always, I think it’s important to get context, a little bit of your background, how you arrived at a chief privacy officer. And you know what your story is. So tell us a little bit about how you got here.
Elizabeth Delahoussaye
So I’ve been in with Sachs for a little over 20 years, you know, through different mergers and acquisitions, I actually ended up having the chief privacy role assigned to me back in 2016. So I’ve been in it for almost seven years now. You know, graduated from the University of Louisiana and health information management was very fortunate that immediately, I got a job that I loved with with this company, and had the opportunity with so much growth as the company had expanded. So when this position had opened up, I was super excited that our CEO at that time saw the potential in me, and actually had approached me about this role, and felt like it would be a really good asset for the organization. So that’s when I was like, I was ready to take it in 2016.
Nick van Terheyden
So for the benefit of people not familiar with, you know, your qualification that bears some relevance to the discussion, I think it’s important to talk a little bit about that before we get into the details.
Elizabeth Delahoussaye
Right. So So I have a bachelor’s in science, just as part of my background. My degree is in health information management, and health information management, just to kind of date ourselves. And anybody who’s listening to this that has been in this field for a long time will probably know it more like a medical records administrator.
Nick van Terheyden
I’m glad you said that, because I didn’t want to use those terms. And I’m thankful that you did because that’s true. That’s what most of
Elizabeth Delahoussaye
us, that’s what most people know us as right as medical records administrator. For that we were like medical librarians.
Nick van Terheyden
Yeah, so, so medical records, and, you know, it’s health information management is the sort of newer version of the way that we describe that, but that’s really the it’s the plumbing, I always described it as in in hospitals and healthcare. It’s the flow of information and the management of that.
Elizabeth Delahoussaye
It is it I mean, it’s your gate. I mean, we’re your gatekeepers, right. We’re the ones who made sure that as the information comes in, that it is complete. And then as information goes out, it’s compliant. You know, are we allowed to release that information, which is what psyops does. So Sachs has several divisions, we have a release of information division, and a lot of providers, outsource with our organizations to actually have staff of our staff at their sides to turn around and provide that service. And what we do is we educate that staff member, you know, obviously, in the federal regulations, but specifically their state regulations, because there’s 50 different state regulations that are out there around how information is supposed to be released out into today’s systems. And so we have to make sure that they’re educated around that. And then all the requests go through our department.
Nick van Terheyden
Yeah, I’m, we’re not going to dive into all the different states and the fact that this is not one country, it’s 50 or 51 of them with all those rules and regulations. But it’s a lot of complexity. And, you know, there’s a bunch of challenges. But, you know, we’ve seen over the last several years, a lot of changes, and I think improvements and you know, to give you a little bit of context, personal context for me. You know, I’ve been traveling I’m, I’m an international person, I’ve lived in a lot of different countries, and I took my medical records. And I actually have paper and physical versions, and, you know, short story, but I have my x rays from 1987 that I was able to take. And by the way, we were looking this up on a window because there’s no light boxes anymore, but I have all of that, but that was actually quite difficult. It was very difficult. But we’ve improved against that. And we’ve seen some improvements. So just to give us some context in terms of where we’re at now. Tell us a little bit about the recent changes and how that started out.
Elizabeth Delahoussaye
Well, I mean, talking about just real quick with your medical records. It’s funny you say that so I was the primary caregiver for my mom prior to her passing away. He’s excuse me, and, and instead of having the paper records, I had like multiple apps on my phone, from all our different health care providers, and it was so frustrating, right to turn around and go, Okay, I’m not the primary care physician, I need to pull up her oncologist records and have to go through my phone, try to find it, here we go, let’s go into the app. And I think that was a lot of challenges that consumers of healthcare is having, right? Whether it be paper or electronic, it was just so siloed in each of your providers locations. And so, you know, now what we’re seeing with the 21st Century Cures Act is, okay, how do we make this so much easier, where it’s all in, I can go in and try to locate information, pull it out, and put it into one central location for myself. And I think about that, I think where we’re at today, if my mom was still alive, from my standpoint would be so much easier, because I could, you know, have some sort of, you know, app, Google Health or whatever the case may be, and have everything imported into that app, and just pull it up and say, look, here’s where she’s at, with all of our different providers, and what you know, what treatment she’s received, whether it be, like I said, from a GP, and oncologist, you know, even, you know, her ophthalmologist, all of those different, you know, services that she was, you know, seeking. And I that’s where I see us now, with that 21st Century Cures Act is what how can we make this so much easier for the patients, they need to have ownership of their health care? You know, they need to make sure that they know what’s going on. And I think that 2030 years ago, I think a lot of times providers were like, they don’t need to understand this, you know, I’m here to explain it to them, which I respect that because that is their specialty, right there, they are there. But the same time because there’s so many specialties, that information still needs to flow with with much more ease and what we saw even five years ago,
Nick van Terheyden
you know, so there’s a couple of points in there that are interesting. So first of all, what you’re saying is that the technology didn’t help you. As we launched, oh, yes, another app, you know, pages and pages of them. And then, you know, what you described, and I think it’s interesting, you talked about ownership of health care. And, you know, the subtext to that, for me has been the ownership of the medical record. And I don’t think it’s quite as controversial now, but it certainly was in the early days was, it’s my medical record, let’s be clear, it’s about me, you know, nothing, no health care. For me, without me involved in that, and I need to have the information, you clearly had some challenges in your world sort of bringing that together, because it was all separate. And now we have the 21st Century Cures Act. So I think it’s important to understand the history to that, and a little bit of the timing, if you could share the specifics of when that came about and what the sort of various markers were in the timeline.
Elizabeth Delahoussaye
Yeah. So I think that let’s start with a different entity, federal government entity first, right? Because, you know, this is something that the ease of flow of information has obviously been HHS is go. And one of their division, which is the Office of Civil Rights, dove into that with high tech. And they talk about in high tech patient right of access. And again, with that, one, they didn’t die unnecessarily with the technology piece of it. And ownership was mainly put on to the provider on that under those rules. As to you Dr. Nick, as a patient, you have obviously a right to access your information, you have a right to direct it to a third party, you also have a right to ask for it in the form of format, in which you feel is ease of use, you know, whether it be paper or electronic. And, you know, that came out back in the early 2000s. And then on top of that, you know, providers, needless to say, you know, trying to roll this all out. There were complaints after was issue that we’re coming into OCR, and so you know, OCR starts issuing guidance, like this is how this is what we’re recommending, this is what you need to do. The big piece of guidance that came out from the Office of Civil Rights was actually in 2016. So you got a time period of almost 10 years of when the high tech comes out, and then hey, we’re putting our foot down. You guys have to follow these particular regs and then they go into that guidance piece of it. And even then, in 2016, with that guidance coming out, you really didn’t see the opposite civil rights come in with any type of civil monetary penalty until 2019. So three years Slater. In the meantime, then you’ve got the 21st Century Cures Act that’s come out. So now they’re focused in on the technology piece of it. And I think what’s interesting with the 21st Century Cures Act is that they did not put the ownership solely on the provider, which, in my personal opinion, was smart. Because your technology has a lot of ownership in this. And there’s only so much a provider can control when it comes to those technology pieces. And so that’s when they started talking about, we need to get everybody in the sandbox, we need to get health information exchange health information technology, obviously, with the you know, providers, and they named them all as actors. And, you know, and basically, this is what you guys need to do to ensure that these patients now have access to their electronic pH i. So that, you know, again, they don’t focus on on the paper piece of it, they see that, you know, we are all moving towards those electronic worlds, you know, trying to get away from that paper documentation. Now, be honest with the doctor, Nick paper is still out there, you know, and as frustrating as it is for everybody. I don’t know if we’ll ever get rid of all that paper. But in the meantime, we do see more and more technology being adopted by the healthcare ecosystem. And now what do we need to do to make sure that these patients now have access through that, and that electronic means, ie the patient portals, you know, or some sort of, you know, app API technology, again, kind of the scenario I talked about a second ago, where, you know, I had all these different apps for, you know, for my mom, was there a way where I could have downloaded it into one particular app, and maintained it and just that one sole source of you know, is the source of truth.
Nick van Terheyden
So for those of you just joining, I’m Dr. Nick the incrementalist today I’m talking to Elizabeth della Husi. She’s the Chief Privacy Officer for cyborgs. We were just stepping back in time. And I think if I summarize that what you said was the government took forever to get any of this done, and took forever to actually put some teeth into the regulations. And, you know, I’ll give it a little bit of context, I actually, and I’m pretty sure it’s 2015, because I carried this memo from OCR. For ever, that I physically handed when there was issues of No, we can’t, we’re not willing to, you know, all of this. And they actually issued guidance that I carried around, and I still have an occasion to use. So I think, you know, for me, there was improvements. It took an awful long time to actually enable that. And you introduce something else that I think is worth just exploring a little because I hadn’t heard this, and I’m curious about it. You use the term actors? Is that actually the definition that’s in the Cures Act?
Elizabeth Delahoussaye
That’s the definition and cures?
Nick van Terheyden
Am I the only one that sitting here and going okay, so who’s the Terminator in this? And who’s Tom Hanks?
Elizabeth Delahoussaye
It does take you a minute to kind of think about it. When you first read it. You’re like, you know, when I first read it, I kind of had that same deal. I was like, I don’t understand what an actor means. Yeah, go out there and define it.
Nick van Terheyden
Right. And and, you know, to be clear that actors in this instance, are everybody that actually contributes to the capture and storing of this information. Right. So, you know, clarifying what’s happened in the past. That was certainly, you know, good intentions, but we didn’t get everything that we needed, for sure. We now have the 21st Century Cures Act. So I think it’s important to understand the 21st Century Cures Act, if you could help us understand the timeline, and you know, the various stamps of where we’ve gotten to that.
Elizabeth Delahoussaye
Yeah. So okay, so the rule that published actually in May of 2020. And so you had until May 2020, to April of 2021, to prepare for it. And then at that point, in April 2021, they said, listen, now, you need to make available to patients, what they call a limited us CDI set, which is basically like your basic data, right, some of your labs, probably some clinical notes, you know, if there was an operative report, discharge summary, HMP, so they gave, you know, almost a year for providers to be prepared for that. And of course, again, for all of the technology out there to be prepped for it. And then they said, Now, once you’ve got that open, because we just had a recently had a date open up of October 6 of 2022. And that is, you’re supposed to have now all ePHI available to patients. So you had some, you know, three major timelines here, one is when it got published, gave you time to prepare for it, read it, digest it, understand, and then, you know, again, the US CDI piece got opened up. And then the big piece was this past October, where all ePHI knees now be available to patients.
Nick van Terheyden
So I’m gonna make sure that everybody understands because I didn’t, II is literally pH i. So it’s electronic, personal health information. And, you know, that’s the important the importance of that is, you know, as I’m looking to my left at my box, physical box of medical records, it’s actually digitally enabled and, you know, delivered in a way that people can process with, you know, tags and so forth. And that’s now two, they had a period of time where, Hey, you, you’ve got to get your house in order. Now it’s enacted. But as you shared with the High Tech Act, okay, so you’re gonna do it, but unless there’s teeth to it, that’s not necessarily going to be a top priority. Or even something that you know, individual organizations want to do, because there are some economic barriers to this. People didn’t want to share information because it helped them ring fence and keep patients in their system. Where are we with the penalties.
Elizabeth Delahoussaye
So there haven’t been any definitive guidance issued around the penalties yet, you will see in the regulations, obviously, a penalty can be issued up to a million dollars. But, and we know complaints have come in. But no guidance has been additionally issued around this and no penalties have issued it. So if you kind of go back to again, just looking at other, you know, federal entities like the Office of Civil Rights, you know, you look at when high tech got published. And then that guidance that got published in 2016. The first CMP was not issued until December of 2019. So it could be a few years before an actual penalty gets issued to a provider. Now, I would also say that if it does, if we base it again, and what we’re seeing from the Office of Civil Rights and the Civil Monetary Penalties that they’re issuing now, it’s not necessarily the large healthcare systems that they’re issuing penalties against. It’s the small providers. And I think that that’s where some of the challenges are probably at is that the smaller providers who are stand alones may not have the subject matter expertise available for them to know what they’re supposed to do. They may not have the financial means to understand what they’re supposed to do. Or, you know, simply like you said, maybe they’re like, I want to keep my patients here, and I just don’t want to do it. So I don’t know if it’ll end up being a situation where it’s the small providers again, they end up having those penalties issued against them.
Nick van Terheyden
Yeah, so I’ve got to feel bad for them. Because I think in most cases, they’re the ones that are probably trying as hard as they can, but they don’t have the resources. It’s, as you described at the beginning. It’s a very complicated area. And, you know, loading on penalties, not helpful. I’m just going to call out to the government. and say, Hey, if you want to issue guidance, just take your 2015 memo just update high tech to say Cures Act. And I think we’re good. Job done, you know, we can speed up the I’m simplifying a little line. But the one of the things I want to be sure you you’re, you keep saying providers, but I want to substitute actors, because it’s not just the offices, right. So there’s some opportunity to say, you know, many of these folks use systems. So it’s if the actors are not delivering, so is that true?
Elizabeth Delahoussaye
That’s, that’s true. And it’s a good call out. And I think that a couple of things you got to think about with all of this is, you know, let’s, let’s look at just basic hospital systems, right. So let’s first talk about you may have a hospital that’s part of a merger or an acquisition. So now they become, you know, hospital a and hospital be added together, become hospital see? Well, they may use two totally different systems. So how are those two systems going to talk to each other? Yeah, what is the actor who’s developing that technology? What are they going to do to ensure that there is a communication flow between those two systems? Or they could actually be using the same system? But they’re on two different versions? Oh, yes. Yep. And yes, right. And you know how challenging that can be is,
Nick van Terheyden
I’m not going to call out but if you have an EMR, you’ve got one EMR and the version issue. So major challenge lots of, you know, technical issues, as you think about this going forward. You know, one of the points that I always like to make is maybe people can get ahead of this. So instead of saying, you know, what’s my minimal compliance? What’s my maximum compliance? And how can I be the good citizen? How can I be Tom Hanks in this, and everybody loves me, because I’m really trying hard, because I think it’s important for, you know, better healthcare, the more informed we are, the better we are. So how do we go about that? Yeah.
Elizabeth Delahoussaye
So I think one of the biggest things that I’ve seen in the healthcare ecosystem is not just because we’re talking about EMR systems, like the the big EMR systems that we know out there. I mean, honestly, doctor take, there’s so many different software systems, I think that’s the one thing that consumers are not aware of, you know, you have a system for your fetal heart monitor strips, you have a system for your your radiology reports, you have a system for your mammogram system, you have a system for your radiation oncology, these are all incremental, they’re not part of the big EMR system. So to get it together is, you know, how do you get this freeway connected with a major interstate, as opposed to just these back roads that are going on right now. And that’s, that’s what the providers are having challenges with, is getting all of these systems connected. And you can imagine, I and of course, now, this is an assumption on my part, I am sure that there is probably a cost for every time you have some sort of, you know, walkway across, and how expensive that can be, you know, when you’ve got 15 Different ancillary systems, and you’re trying to get all this information fed in. And, and I have seen it where as basic and elementary, this is where providers are literally tracking their Ph I within the organization on an Excel spreadsheet, because that’s how they’re trying to track all of the locations of information that are coming into their systems.
Nick van Terheyden
I’m just going to say Excel is better than a piece of paper or a post. It’s
Elizabeth Delahoussaye
your big box over there next.
Nick van Terheyden
Okay, so major challenges, you know, developing that interstate information highway, I think is the key. Where, you know, all bets are off at this point, you know, you should be we just don’t know what the consequences are. We do know that there’s a million dollar. I want to say cat, but maybe it’s not because it could be per individual instance. So my records a million, you know, so that could be a lot more. Where do we go from here?
Elizabeth Delahoussaye
I think the conversations need to keep going. Right. And I And again, I think the fact that we have technology now involved as being categorized as an actor, I think that was the biggest piece that I am actually excited about because they need to be sitting at the table along with their competitors to talk about how do we start integrating this technology? Eat more and more and making, like you said, more accessible to these patients so they can have access to it.
Nick van Terheyden
So I think, you know, as I think about the technology piece, it for me, it always feels like it should be solvable, this is not a problem that can’t be fixed. You know, it may boil down to money or cost ultimately, but, you know, if it’s an older system, perhaps it’s time for that older system to go off to the burial site that, you know, these old systems do DOS, Windows 95, although I hear that Windows 95 still persists. Windows XP, Windows XP, Windows NT, so Well, clearly dating ourselves. So I think, you know, some real potential to bring this all together some opportunity, I think good news for patients, good news for physicians and systems. And I think also for the technology sector that is now included as part of that solution set as the actor so you know, I my call out my incremental step for those folks is for the technology sector to not be the Terminator, but to be the the Wally in all of this and bring their character and, you know, commitment to actually delivering it. Unfortunately, as we do each and every week. I’ve run out of time, so it just remains for me to thank you for joining me on the show. Elizabeth. Thanks for coming on the show.
Elizabeth Delahoussaye
Well, thank you for inviting me. I’ve enjoyed talking to you
