Latest / CareTalk: Healthcare. Unfiltered. / State Health Data Laws Are a Patient Safety Problem w/ Leigh Burchell, Altera Digital Health

Transcript

State Health Data Laws Are a Patient Safety Problem w/ Leigh Burchell, Altera Digital Health · CareTalk: Healthcare. Unfiltered.

• 0:00
  David: Both red and blue states are imposing new requirements on the sharing of sensitive health data.
• 0:05
  David: The emerging patchwork creates the potential for patient harm, and it's causing a nightmare for the EHR vendors who have to comply.
• 0:13
  David: Some states now require reproductive health and other sensitive data to be withheld from records shared across systems, while others are moving the opposite way, expanding parental access to teenagers' records.
• 0:24
  David: Both of those carry clinical risk, and a patient's rights now vary dramatically depending on which state they live in or happen to seek care in Hi, everyone.
• 0:38
  David: I'm David Williams, President of strategy consulting firm Health Business Group, and host of the Health Biz podcast, where I interview top healthcare leaders about their lives and careers.
• 0:47
  David: My guest today is Leigh Burchell.
• 0:48
  David: She's Vice President of Policy and Government Affairs at Alterra Digital Health, and she's chair of the Electronic Health Record Association, whose members build the EHRs used by most of the nation's hospitals and physician practices.
• 1:00
  David: Leigh is a top voice in front of lawmakers and regulators in Washington and the states.
• 1:06
  David: Leigh, welcome to the Health Biz podcast.
• 1:08
  Leigh Burchell: Hi.
• 1:08
  Leigh Burchell: Thank you.
• 1:09
  Leigh Burchell: Happy to be here.
• 1:11
  David: So you sounded the alarm about this patchwork of state laws on health information that could actually put lives at risk.
• 1:18
  David: I talked a- about it a little bit in the introduction, but what's going on?
• 1:22
  Leigh Burchell: Yeah, I mean, this is a- an interesting topic, and I, I appreciate the invitation to talk about it.
• 1:27
  Leigh Burchell: I think that, um, it isn't something that's necessarily getting a lot of attention.
• 1:32
  Leigh Burchell: The, the technical challenge, uh, and the compliance challenge of a patchwork of a- of approach in any type of, uh, software regulation is getting, um, is getting attention, but not necessarily the fact that there's some patient safety risk that could come from this.
• 1:48
  Leigh Burchell: So essentially, um, in a couple of areas, a couple of, um, of policy areas, we're seeing the states really diverge from one another depending on their political environment.
• 2:01
  Leigh Burchell: Um, and one of them, uh, one of those areas that, that you're seeing a lot of, of disparity is in, um, kind of patient consent management, um, the, the, uh, use of, uh, health information technology, um, and the data that's stored in it, which is frequently very sensitive, um, and how that can be managed.
• 2:25
  Leigh Burchell: Who has the right to say where that data goes?
• 2:28
  Leigh Burchell: Um, and in some cases, the states are being pretty prescriptive, and, um, it's interesting.
• 2:34
  Leigh Burchell: They're very, very different, uh, and we can get into that certainly.
• 2:38
  Leigh Burchell: Um, but, you know, both approaches do introduce some risk in deter- in terms of patient care, and so I think it's something that we need to- we need to talk more about
• 2:49
  David: So let's, let's, let's get a little bit specific, and we'll start with the big state of California and make this a bit real for people.
• 2:54
  David: You know, back in the day, I remember y- people would be concerned about their HIV test being shared or, or mental health, but this is before the electronic record, and you could just- Right … you know, take which, which files are you sending.
• 3:04
  David: But if we look at California, I think they have a bill, AB 352.
• 3:08
  Leigh Burchell: Mm-hmm.
• 3:08
  David: And it makes the electronic health records segment out the reproductive and gender-affirming care data and block it from going out of state.
• 3:18
  David: Now- Yeah … I, I think that's probably done with good intentions, but … or w- at least with a specific intention.
• 3:23
  David: But how, how could that hurt a patient?
• 3:25
  Leigh Burchell: Yeah, I mean, this is interesting.
• 3:27
  Leigh Burchell: California's a good example.
• 3:28
  Leigh Burchell: Maryland, uh, was actually the first state to do it.
• 3:31
  Leigh Burchell: Massachusetts is moving in that.
• 3:33
  Leigh Burchell: They've passed something, just haven't implemented it yet.
• 3:36
  Leigh Burchell: Um, and they all take a little bit of a different approach, but it really is about, uh, the state defining a category of what they call sensitive health information, sensitive health data.
• 3:47
  Leigh Burchell: Um, in many cases, uh, that's related to, um, abortion, uh, related to gender-affirming care, and related to contraception, and so they've defined those, um, as being sensitive health data.
• 3:59
  Leigh Burchell: Massachusetts actually goes a little bit further and talks about, um, kinda mental, uh, mental wellness and, and care in that area.
• 4:06
  Leigh Burchell: And they all take the approach of the state saying, where you have this type of data about a patient in their medical record, when you are sharing that record with somebody else, you're transmitting that patient's data for any number of reasons, um, but including, you know, care by somebody else, um, or maybe to an HIE or something like that, that that sensitive health data should not be included in what is transmitted, that that should be segmented and withheld.
• 4:37
  Leigh Burchell: And so that's an interesting approach because It kind of fundamentally, uh, runs into the idea of in- health information exchange, right?
• 4:48
  Leigh Burchell: And this idea that, um, all of our records are gonna be, um, you know, accessible under HIPAA, of course, under appropriate, um, constructs, by people for whom it's relevant, by people who, you know, otherwise would have a reason to see your record.
• 5:04
  Leigh Burchell: And so what that kind of means is that in, in a lot of instances, that record isn't actually going to com- be complete.
• 5:11
  Leigh Burchell: It isn't actually going to be something maybe that the provider who receives it can really trust and act on as being the full comprehensive record so that they know what medicines you're taking, um, what kind of care you've received, what procedures you might have had recently, that type of thing.
• 5:30
  Leigh Burchell: And so you can see how, you know, d- did that, did that work from a patient for safety perspective?
• 5:37
  Leigh Burchell: I think there, it, it certainly undermines trust, um, you know, in that process, right?
• 5:43
  Leigh Burchell: The provider's feeling like, "Okay, I can trust this data. I feel good about it.
• 5:46
  Leigh Burchell: I know the providence of it," et cetera.
• 5:48
  Leigh Burchell: Um, it, it definitely undermines that, and then you get into, "Okay, well, can I even use this data?
• 5:55
  Leigh Burchell: Uh, am I safe to use it?
• 5:57
  Leigh Burchell: Or do I just need to start over," which is the opposite point of information exchange, um, with that patient and pretend that I don't have any information about them?
• 6:05
  Leigh Burchell: So it's, it's a pretty interesting challenge
• 6:08
  David: Now, what is the motivation for these states that are passing these laws?
• 6:12
  David: Is it, is it a patient protection?
• 6:13
  David: Is it a provider protection?
• 6:15
  David: Is
• 6:16
  Leigh Burchell: it just- Uh, it's both, uh- Yeah … for sure.
• 6:18
  Leigh Burchell: Um, that's a good question.
• 6:20
  Leigh Burchell: It's definitely both.
• 6:21
  Leigh Burchell: So, um, in, you know, it started in Maryland specific to abortion, and the idea was that, uh, following the Dobbs decision at the Supreme Court, they saw that patients were coming in from neighboring states where abortion was no longer legal, coming into the state to receive care, and they didn't want those patients, um, if back home, you know, their provider pulls their record and says, "Hey, what have you been up to?
• 6:45
  Leigh Burchell: What kind of care have you received?" For them to be subject possibly to prosecution, um, you know, that, that type of, um, scenario.
• 6:54
  Leigh Burchell: And so, you know, I think different states have taken different, different approaches here, but definitely protective of the patient.
• 7:00
  Leigh Burchell: And then we saw, you know, there are some states that have, uh, passed laws, we haven't really seen them play out yet, um, and, and be tested, but, um, saying that providers in other states who administer care that has been defined as illegal back in their home state could maybe be prosecuted or sued or somehow, um, you know, fall under the jurisdiction of the patient's home state.
• 7:27
  Leigh Burchell: And so then you see the, the effort to, uh, protect the, the provider as well.
• 7:33
  David: Right.
• 7:33
  David: Makes sense.
• 7:33
  David: Okay.
• 7:33
  David: So you can see there's a motivation.
• 7:35
  David: This isn't just a faddish thing-
• 7:37
  Leigh Burchell: Oh,
• 7:37
  David: absolutely … that, that, that people are doing, but they're all doing it different ways, which is, if you have to implement that- Yes that's hard.
• 7:42
  David: It's a big challenge.
• 7:42
  David: Let's talk about this, let's talk about states going the other direction.
• 7:45
  David: Yeah.
• 7:45
  David: You can tell me w- which are the right ones.
• 7:46
  David: So Utah is one I've heard about- Mm-hmm… where it used to be that when a patient gets to a certain age, I, I don't know, you can tell us, 16, whatever, that they have control of their record and the pa- the parent doesn't necessarily see it.
• 7:58
  David: And if I understand properly, and it sounds like Utah's gone, there's a lot of different versions of it where they, where they were looking, but basically it's making the health systems give the parents full access- Mm-hmm … to a minor's record up to 18.
• 8:10
  David: So they're in a way- Putting more information that was previously perhaps blocked or limited to certain people.
• 8:16
  David: Hel- help me understand that, that one Yeah,
• 8:18
  Leigh Burchell: no, that's exactly it.
• 8:19
  Leigh Burchell: So Utah's an example, Texas, West Virginia, South Dakota, uh, Tennessee just passed it.
• 8:25
  Leigh Burchell: Um, so there are quite a number of, um, states.
• 8:28
  Leigh Burchell: This is, uh, definitely a so-called red state trend, um, that we're seeing, seeing here.
• 8:34
  Leigh Burchell: And it boils down to a sense that, um, parents and/or guardians, people with appropriate, you know, care responsibilities for patients who are under 18 should have access to their full medical record.
• 8:48
  Leigh Burchell: And so, um, y- the, the age of consent varies in a lot of states, uh, as you alluded to, and so really what this just says is it, you know, it's up to 18.
• 8:59
  Leigh Burchell: Now, there are some exceptions for emancipation or, you know, scenarios like that, but, um … And, and married, um, people who are under 18, uh, people who join the military.
• 9:09
  Leigh Burchell: But largely it's 18, and so in that scenario, um, you know, I, I think this is, this is a really interesting one from a totally different angle.
• 9:19
  Leigh Burchell: So, um, you know, I think everyone is familiar with topics that might be something that a 15-year-old, 16-year-old, 17-year-old wants to talk to their doctor about, um, in a private manner, right?
• 9:32
  Leigh Burchell: And maybe they haven't had those conversations with their parents.
• 9:35
  Leigh Burchell: So that could be something around birth control, it could be something around gender identity.
• 9:39
  Leigh Burchell: There's, you know, a bunch of different topics that might come up.
• 9:42
  Leigh Burchell: And it used to be, based on age of consent in various states, that the pediatrician who they're seeing would say, "Is this something that you want your parents to have access to?" And in that case, the access to the patient portal might be adjusted, um, because that configuration is, is controlled by the provider organization.
• 10:02
  Leigh Burchell: So they might say, "Okay, you know, Lee is 16 and she's talking about stuff, and she doesn't want her mom to see it. Um, we're gonna turn off her parents' access to the portal and it's just her data now," right?
• 10:13
  Leigh Burchell: So these states make that, um, illegal.
• 10:16
  Leigh Burchell: It has to be available to the, to the parent or the guardian.
• 10:19
  Leigh Burchell: So, you know, there, it raises a lot of questions.
• 10:22
  Leigh Burchell: So it's not only the go forward conversation, but if I am now 17, and at 15 I shared something, um, does that now, you know, maybe now my pediatrician will say to me Just so you know, your parent will have access to your data, and anything that I capture is, is going to be visible.
• 10:42
  Leigh Burchell: What does that mean for stuff that was shared historically, right?
• 10:45
  Leigh Burchell: And maybe there, um, is some stuff there that they wanna take back, right?
• 10:51
  Leigh Burchell: Um, how do you take that back?
• 10:53
  Leigh Burchell: Uh, so it, it's definitely interesting and, and you know, there are scenarios in which there is a, a patient safety risk, um, in a home environment where there's a big disparity of opinion or maybe there's a, um, LGBTQ child who doesn't feel comfortable with their parent knowing that type of thing.
• 11:12
  Leigh Burchell: Um, and so, you know, there, there are scenarios where that also could introduce some exposure for the patient
• 11:21
  David: Okay, so we've got some states going in one direction, some states- Yep … going in another direction.
• 11:25
  David: But it's not just two, they're all sort of, you know, moving around a little bit differently.
• 11:28
  David: Yeah.
• 11:28
  David: And then of course we've got the federal government, and you talked about interoperability- Mm-hmm … which is a, which is a goal that's been worked, uh, toward for a long time.
• 11:35
  David: And as I understand it, the federal rules would basically look for a complete and shareable record.
• 11:39
  David: Yeah.
• 11:40
  David: Then you've got the states going in different directions.
• 11:42
  David: So now let's get to the point, I think, where it becomes interesting for your members, which is if I'm a vendor-
• 11:47
  Leigh Burchell: Mm-hmm… David: how do I actually Uh, not easily, I can tell you that.
• 11:54
  Leigh Burchell: Um, there's a lot of challenges that come into it.
• 11:56
  Leigh Burchell: The first, of course, is just navigating what are all of the requirements, and to your point, it's not just state to state, it's also federal.
• 12:04
  Leigh Burchell: So largely, you know, there's the information blocking regulation that most people are familiar with from 21st Century Cures, and that really says all information should be moving unless there's a very specific reason for it not to.
• 12:18
  Leigh Burchell: There is, uh, an allowance in the information blocking regulation for states to impose, um, you know, guardrails or stricter interpretations, and so that's largely where a lot of these states are, um, are, you know, kinda looking when they're saying, "We know we're countermandering a little bit of the information blocking regulation," but, um, that, that is allowable.
• 12:42
  Leigh Burchell: But I mean, it really is a challenge, um, first of all, to stay on top of all of this.
• 12:47
  Leigh Burchell: Second, from a technical perspective, it is not our favorite thing when requirements vary from state to state.
• 12:54
  Leigh Burchell: You know, this topic we're talking about is certainly not the only one.
• 12:58
  Leigh Burchell: There are, you know, plenty of places that different states have different requirements.
• 13:01
  Leigh Burchell: California, who you mentioned, tends to love to do their own thing.
• 13:05
  Leigh Burchell: Um, there are a couple of states who like to do that.
• 13:08
  Leigh Burchell: But you know, it's just harder.
• 13:09
  Leigh Burchell: It takes more development time.
• 13:10
  Leigh Burchell: It takes deployments that are more complicated because, you know, our teams have to know how to work with a California client differently than an Iowa client differently than, you know, a New York client, right?
• 13:22
  Leigh Burchell: So there, the, it definitely introduces a complexity that, uh, we would like to avoid, uh, if at all possible.
• 13:31
  David: You know, when you talk about, let's say, California going its own way, it's different here I think in a way, which is that if I … So k- so one place California has rules is about the gasoline.
• 13:41
  David: Mm-hmm.
• 13:42
  David: Let's say I have to like different gasoline in California than I have somewhere else.
• 13:45
  David: But if I'm, let's say, coming from Arizona and I drive into California, well, I have to buy California gas.
• 13:51
  David: But I, I can easily drive it back over to Arizona and, and if s- I live in California, I can get gas in Arizona.
• 13:56
  David: But what about the patient?
• 13:58
  David: What about a patient who- Mm-hmm… started off in California and then moves to or sees a provider in another state?
• 14:04
  David: W- who, whose rules are in charge of that?
• 14:08
  Leigh Burchell: The, I mean, certainly the state where you deliver care is gonna govern, uh, what is happening in that encounter, in that data documentation decision by the provider organization.
• 14:18
  Leigh Burchell: And it does introduce, uh, you know, an interesting question.
• 14:22
  Leigh Burchell: If you're a California resident and you, and you move to Utah, for example, right?
• 14:27
  Leigh Burchell: Or, um, during the pandemic, lots of people moved from Washington State to Idaho State.
• 14:31
  Leigh Burchell: Very, very different political climates, thoughts on, um, you know, patient autonomy and data and all of that kind of thing.
• 14:38
  Leigh Burchell: Um, do you not bring your data over with you?
• 14:42
  Leigh Burchell: Uh, do you, you know, do you, first of all, need to be aware of it as a patient, which I can guarantee you 99% of patients are not.
• 14:49
  Leigh Burchell: Um, uh, you know, I'm not aware of gasoline regulations, to your point.
• 14:53
  Leigh Burchell: I just kind of show up, and I do my thing.
• 14:55
  Leigh Burchell: Uh, so, you know, how much does the patient need to know?
• 14:58
  Leigh Burchell: There's a lot that is kind of being put on patients today around knowledge about their health data and what privacy rules apply.
• 15:06
  Leigh Burchell: Um, but then do you kind of… Do you know, do you move somewhere and you say, "Um, I'm not gonna share my data from California and, you know, sorry, Utah doctor, I am, um, I'm gonna s- kind of start over with you, and I'll tell you what I feel safe telling you, which is not my full story." That doesn't seem, that doesn't seem ideal either.
• 15:25
  Leigh Burchell: But it, it, and it's, it's creating kind of a guarded, um, environment, you know, a little bit of one where that information exchange just isn't as simple of a decision as it used to be.
• 15:39
  Leigh Burchell: I think you, you kinda touched on something really important there.
• 15:43
  David: If I think of, I'll use some analogies.
• 15:45
  David: I, I thought it was funny when you said everybody's aware of the, uh, data, you know, data blocking rule.
• 15:49
  David: Right.
• 15:49
  David: And I'm not, I'm not sure everybody, but many of our listeners do not.
• 15:52
  Leigh Burchell: Well, I, I meant more people who like, you know, live and help IT.
• 15:54
  Leigh Burchell: We, we, uh, we certainly are.
• 15:56
  Leigh Burchell: Yeah,
• 15:57
  David: of course.
• 15:58
  David: So but let me give then maybe an interoperability example that, uh, everyone could understand, which is your ATM card.
• 16:04
  David: Right?
• 16:04
  David: So if you, if you go around, you could use… You, you might have to pay a fee, but I can go and I can get money out of my… I can get, uh, anywhere really in the world, but certainly around the US.
• 16:13
  David: And if you had all these different sort of regulations and actually weren't allowed to share information about my bank account or my identity or whatever, you'd actually just find out you can't actually go and put your card in and get money somewhere.
• 16:25
  Leigh Burchell: Right.
• 16:25
  David: Like, it would just would not be a possible thing to do.
• 16:28
  David: So we, so there's a lot of value of interoperability when it's done right.
• 16:32
  David: You mentioned before, um, just the complexity, and these things have a cost, and everyone's concerned about the cost of healthcare, and- Yeah … we introduce new costs by doing this.
• 16:41
  David: I'm not sure if you can do this at all, but if, think about, like, a typical, say, decent sized vendor, electronic, you know, health record vendor, h- what does it cost them in terms of, you know, engineering, product development or whatever to comply with this sort of thing?
• 16:59
  David: Is there a way to think about that?
• 17:01
  Leigh Burchell: Yeah, I mean, I couldn't give you a dollar amount.
• 17:02
  Leigh Burchell: I am just not exposed to that, that part of the process for my company.
• 17:07
  Leigh Burchell: But I can tell you, I mean, it is minimally hundreds of hours- Per state, right?
• 17:14
  Leigh Burchell: Depending, and sometimes more, depending on what they put out.
• 17:17
  Leigh Burchell: So I mentioned we started with Maryland in terms of this, um, sensitive health data concept.
• 17:23
  Leigh Burchell: They're-- they've been through several iterations of requirements because it's a couple of years old, and so we keep having to do work.
• 17:30
  Leigh Burchell: It's not even just the initial work, which there's no, there's still currently no, um, federally promulgated, uh, standard for data segmentation or that type of ability to break up the data and say,"This should move, this should not move." Um, so we're all doing this, you know, to the best of our ability, um, as efficiently as possible.
• 17:53
  Leigh Burchell: And through the Electronic Health Record Association, we all share best practices, you know, technical approaches, things that we're thinking.
• 18:00
  Leigh Burchell: Um, but you know, it, it takes a huge amount of work up front, and then it's not done.
• 18:05
  Leigh Burchell: The states tend to kind of iterate after that.
• 18:08
  Leigh Burchell: M-Maryland was fairly prescriptive about what they wanted and, and while what they wanted was a big lift, it was a lot of work, they still were pretty specific.
• 18:17
  Leigh Burchell: California put out a regulation, or put out a law, they didn't put out a regulation, and said, "We're not gonna put out regulation.
• 18:23
  Leigh Burchell: We want the industry to just work together and figure this out." Well, theirs has a whole other set of challenges because there's a geographic element of it, right?
• 18:32
  Leigh Burchell: You mentioned that in California the data can't leave the state.
• 18:36
  Leigh Burchell: It can be exchanged within the state, but it cannot leave the state.
• 18:39
  Leigh Burchell: That's different than Maryland, and that has a whole other set of problems.
• 18:43
  Leigh Burchell: Plus they introduced the gender-affirming care and the, and the birth control, and that's much bigger than abortion, right?
• 18:49
  Leigh Burchell: And so that was a much bigger thing, and they didn't even put out regulations.
• 18:52
  Leigh Burchell: And so it takes us, I mean, hundreds if not thousands of hours of engineering.
• 18:58
  Leigh Burchell: Then you get into the services and the deployment and working with clients and helping them understand.
• 19:02
  Leigh Burchell: It is not insignificant, and so there is a real cost associated with this type of state-by-state by state patchwork approach.
• 19:11
  Leigh Burchell: And you know, that to your, you know, to your point that you made about the systemic cost of healthcare, that doesn't help.
• 19:18
  David: No.
• 19:20
  David: So kind of the obvious thing in a way would be to say, "Let's, let's have the Feds step in here and, you know, have rules overall." And there's a history of that because you had HIPAA, which was really before the electronic era, and then- Absolutely … HITECH, the Affordable Care Act, and a lot of things that have been moving forward, including my friend, uh, Micky Tripathi, when he was head of, uh, ONC, you know, did a lot to try to have actual interoperability, which is for better patient care and also should lower costs, uh, overall.
• 19:49
  David: But if we look at where that stands, so I think there was a federal HIPAA reproductive health privacy rule- Mm-hmm … that was vacated last year.
• 19:57
  David: And so is it actually realistic to try to push for kind of a, a national approach, or do we just need to figure out how to deal with this patchwork for the foreseeable future?
• 20:07
  Leigh Burchell: Yeah, I think, uh, specific to, uh, the type of sensitive health data that we're talking about, there, it's not gonna be addressed at the federal level.
• 20:16
  Leigh Burchell: Um, you know, it's just too politically fraught, and there's no agreement, uh, between the, the parties.
• 20:22
  Leigh Burchell: Obviously, they're coming at this, you know, topic from a very different perspective.
• 20:26
  Leigh Burchell: And so I don't think that will, will happen.
• 20:28
  Leigh Burchell: There are other places that we are hoping for, uh, federal action specific to health IT.
• 20:34
  Leigh Burchell: Um, you know, general privacy, um, and security, we could use a stronger national framework there than we have.
• 20:44
  Leigh Burchell: Uh, you know, legislation, you mentioned HIPAA.
• 20:47
  Leigh Burchell: HIPAA, of course, doesn't address, you know, kind of the appification of healthcare, right?
• 20:51
  Leigh Burchell: And, and the fact that so much data leaves HIPAA-covered, um, environments and goes out, and patients, you know, again, don't know what that looks like, and they don't understand their exposure.
• 21:03
  Leigh Burchell: So, you know, Dr. Cassidy, Senator Cassidy had introduced some legislation there.
• 21:07
  Leigh Burchell: Um, I'm not sure that's gonna move.
• 21:09
  Leigh Burchell: But there are some efforts at the federal level to address things.
• 21:12
  Leigh Burchell: But on that reproductive health or gender-affirming care, I would not put a dollar on that bet.
• 21:21
  David: So I mentioned in the intro that you are a voice in the state houses as well as Washington.
• 21:26
  David: And what do you tell legislators who are writing these sorts of bills?
• 21:31
  David: What are the sort of things that they should know, uh, before they put pen to paper?
• 21:36
  Leigh Burchell: Yeah, I mean, I think, you know, it's really important to affirm, uh, that they believe they're working from good intentions.
• 21:43
  Leigh Burchell: And, and we're not, we're not trying to fight, you know, the, the good intentions that, that they're putting into their work.
• 21:51
  Leigh Burchell: You know, I think it really depends because there is so much variety in these laws, but I'll give you an example.
• 21:57
  Leigh Burchell: So Illinois right now has a bill that's been introduced very, very, very similar to Maryland's.
• 22:03
  Leigh Burchell: Uh, and so the EHR Association has, uh, reached out and is going to be, um, speaking to one of the sponsors just to try to be educational, right?
• 22:13
  Leigh Burchell: I think one of the challenges of these types of laws coming out is that health IT is very complicated, and there are a lot of factors that, you know, your average lawmaker is not necessarily familiar with.
• 22:26
  Leigh Burchell: They're not thinking through, "Oh, wait a second. What are the, what's the ripple that comes from this wording choice or this definitional choice that I'm, that I'm proposing?" And so really what we just try to do is be a resource, um, and, and help them understand how does that play out in the real world?
• 22:43
  Leigh Burchell: What have been, you know, the w- how has Maryland played out, just in, in the Illinois example, and where might this cause you guys headaches, right?
• 22:51
  Leigh Burchell: And so maybe you want to take a little bit of a different direction here.
• 22:54
  Leigh Burchell: We're not trying to stop the bill.
• 22:55
  Leigh Burchell: We're supportive of what you're trying to do.
• 22:57
  Leigh Burchell: However, you know, think this part through, right?
• 23:00
  Leigh Burchell: That tends to be the approach we take.
• 23:02
  Leigh Burchell: Um, and we have a great collaborative relationship with the regulators in Maryland.
• 23:07
  Leigh Burchell: Um, we're constantly going back and forth and trying to help each other.
• 23:11
  Leigh Burchell: Um, but you know, it is that real-world, boots on the ground, what does it take to work with the healthcare providers who are using the software that can be really instructive to them and really help fine-tune down to actually get to the intent that they want and not maybe some, uh, unintended consequences.
• 23:30
  David: That makes sense.
• 23:31
  David: So I'm glad to hear that a lot is going on and, and it certainly speaks to the value, the value of having an association as opposed- Yeah … to, uh, also however many 30-plus, uh- Yeah … EHRs- Definitely … are just trying to do the same thing.
• 23:42
  David: If we look beyond where we are now and say, okay, maybe, maybe this podcast and other activities will, will bring some a little, a little bit more certainty to the market.
• 23:53
  David: What are the next issues as you look ahead and thinking specifically maybe about, you know, consent management, patient data?
• 23:59
  David: What are, what are the other things that are on the horizon?
• 24:01
  Leigh Burchell: I mean, I do think what I touched on in terms of that appification idea of healthcare is a really, really important conversation.
• 24:09
  Leigh Burchell: There is so much good that can come from patients being engaged and really an active participant in their own healthcare, and apps are gonna be fundamental to that, and that's awesome, right?
• 24:21
  Leigh Burchell: We're all patients, regardless of what industry we work on or think about all day.
• 24:26
  Leigh Burchell: Um, we're all patients or we're caregivers for our parents or our children or whatever.
• 24:30
  Leigh Burchell: I think that's fantastic, but I do worry about people not being aware of where their data is going or not being aware of what can happen with their data when it's in an environment, um, that is not protected by HIPAA.
• 24:44
  Leigh Burchell: And, you know, we've seen some interesting things come up recently with some, uh, news that came out about some HIEs selling identified data, uh, to HHS for research, for example, with, you know, maybe the patient probably didn't know about that because you go into your, your doctor's office, they hand you the HIPAA form.
• 25:03
  Leigh Burchell: You're not reading probably every single thing in there.
• 25:05
  Leigh Burchell: You're signing like, "Get me in, I'm … You know, I have a sore throat.
• 25:08
  Leigh Burchell: I need to see somebody." And you're not necessarily realizing what's happening with your data, right?
• 25:12
  Leigh Burchell: And so I, I do think that's an unavoidable conversation that we're going to have to have.
• 25:20
  Leigh Burchell: I hope it's at the federal level because I want some consistency in this area, but I suspect if it doesn't, uh, we're gonna see certain states take it up.
• 25:30
  Leigh Burchell: I mean, you know, we could probably all name which states are gonna take it up, and, um, that then creates more patchwork.
• 25:36
  Leigh Burchell: So that's why, you know, I keep just, um, you know, hoping and praying for some kind of federal framework.
• 25:44
  David: So Leigh, beyond a shared interest in healthcare information technology policy, you're both also graduates of Wesleyan University, and I'm wondering I'm wondering if, did you learn something at Wesleyan that, that helps you, uh, with these problems that you're addressing now?
• 25:57
  Leigh Burchell: Oh, absolutely.
• 25:58
  Leigh Burchell: I mean, I'm, I'm such a, a, a Wes fan, and um, my husband, I met my husband there, and um, both of my sons got in and chose to go elsewhere, so that was, um, not my, not my favorite moment.
• 26:11
  Leigh Burchell: But, um, absolutely, I mean, Wesleyan, I- I'm a fan of liberal arts colleges.
• 26:17
  Leigh Burchell: I think they just challenge your brain in a way that is different from a lot of other environments.
• 26:25
  Leigh Burchell: Uh, you know, I- I assume you agree.
• 26:27
  Leigh Burchell: We really learn to think.
• 26:29
  Leigh Burchell: I mean, we, we learn to take a challenging topic and look at it from four different angles and, and really, you know, do some real thinking.
• 26:39
  Leigh Burchell: And you know, it's interesting in, in this age of AI and all of this and, you know, people are starting to kind of wonder about a computer science degree, um, in a way that they wouldn't have five years ago.
• 26:50
  Leigh Burchell: What I keep seeing over and over again that's really fascinating to me is the sense that people who graduate with a liberal arts degree, who go somewhere like Wesleyan and really are challenged and, and learn to think of that whole picture, are going to be so much more important and valuable, because the AI can't do that, right?
• 27:10
  Leigh Burchell: The AI can, you know, do the code real fast, but that thinking ability and that ability to question yourself and, "Am I looking at this from all the angles?" And doing a little argument with yourself, right, before you turn in that paper, um, I, I just think is, it's foundational.
• 27:28
  Leigh Burchell: It certainly, uh, has been, I mean, critical, critical, critical to, to my own success.
• 27:35
  David: Good.
• 27:36
  David: Well, I'd say likewise.
• 27:37
  David: I, I don't have any kids that went to Wesleyan either.
• 27:39
  David: Some weren't interested, one didn't get in.
• 27:41
  David: Mm-hmm.
• 27:41
  David: So
• 27:42
  Leigh Burchell: that's it.
• 27:42
  Leigh Burchell: Yeah, one of mine chose- That's it … Middlebury, if you can imagine.
• 27:45
  Leigh Burchell: So, um- Ouch.
• 27:46
  David: Yeah… Leigh Burchell: they're, they're playing and I don't know who to root for.
• 27:51
  David: Yeah.
• 27:51
  David: Yeah, exactly.
• 27:52
  David: Well, they're at least both in NESCAC, so both good- … good places.
• 27:55
  Leigh Burchell: Mm-hmm.
• 27:56
  David: That's it for another episode of the Health Biz Podcast.
• 27:58
  David: I'm David Williams, president of Health Business Group.
• 28:01
  David: My guest today has been Leigh Burchell.
• 28:03
  David: She's chair of the EHR Association and VP of Policy and Government Affairs at Alterra Digital Health.
• 28:09
  David: If you like what you heard, please subscribe on your favorite podcast platform.
• 28:13
  David: And thank you, Leigh.
• 28:14
  Leigh Burchell: Yeah, thank you so much.
• 28:16
  Leigh Burchell: This was fun.