If the mark of a good leader is the ability to evolve, as many believe it is, then Chuck Christian may be one of the greatest. Throughout his career, he’s been a staunch advocate for state’s rights, and a firm believer that healthcare is provided locally, and therefore should be governed locally. But as someone who has been heavily involved in advancing data sharing (both as VP of Technology and Engagement with the Indiana Health Information Exchange, as well as an active member of CHIME and HIMSS), he has seen the challenges created by the lack of an overarching consent model. And so, he believes perhaps it’s time to make some compromises.
Recently, we spoke with Christian about why he believes the patient-centered data home model could be a difference maker, the need for better education and more transparency when it comes to data access, and what he hopes to see from ONC’s proposed rule. He also provides his thoughts on CommonWell and Carequality, the obstacles still facing smaller facilities when it comes to federal regulations, and what he believes is the key to effective advocacy.
- MyHealthEData & Blue Button 2.0
- “We need to make sure we’re appropriately educating individuals.”
- Learning from Facebook’s mistakes
- Moonshot program & the push for data access
- Physicians as gatekeepers – “We’re still dealing with silos of data.”
- IHIE’s patient-centered data home initiative
- Wading through “thorny issues” with patient consent
LISTEN NOW USING THE PLAYER BELOW OR CLICK HERE TO SUBSCRIBE TO OUR iTUNES PODCAST FEED
We need to make sure we’re appropriately educating individuals about how their data is going to be used, rather than having them just say, ‘Sure, you can have it.’
We’re still dealing with silos of data, but we’re looking for ways to update those silos in a trusted mechanism. I think that’s one of the underlying premises of interoperability.
It’s a marathon. It is not a sprint. We tried it as a sprint and got breathless and exhausted very quickly. So we just need to keep digging at it.
It hamstrings the formative piece of that where we’re going to inform care wherever that patient goes. It’s one of the many thorny things we need to address as a nation — can we come up with a model of consent that works in every care setting?
Gamble: Looking back at 2018, a lot of significant things happened in healthcare, but I’d like to start with the announcement that came back at HIMSS18 from Seema Verna about MyHealthEData. When that happened, there was a big splash — ‘let’s overhaul Meaningful Use,’ which a lot of people cheered for, but it’s far more complicated than it sounds. What are your thoughts on MyHealthEData and other initiatives to endure patients get a copy of their records?
Christian: Sure, I’ll tell you what I understand. This is like Blue Button 2.0. One of the things it does is give patients access to four years’ worth of claims data. Patients will be allowed to give other people access to it. For example, if they have an app on their phone from Medicare Part D, and they want to give them access to their medication history and profile, they can tell CMS, ‘I’m giving these folks the rights to access my data.’ And those providers will be able to get in and use the API and extract four years’ worth of claims data.
One of the things I asked when I was on the phone with those folks was, ‘Is there anything CMS is doing to ensure that secondary use of the data is going to be appropriate and protect the consumer?’ They basically said, ‘Once the patient gives their blessing to that individual to access the data, it’s up to the individual to ensure that they read the privacy and use requirements about how they’re going to use the data.’ I thought to myself, ‘When was the last time I read an end-user license agreement or a privacy statement?’ And how many other large companies in the private sector — and I’ll use Google and Facebook as examples — have been caught with their shorts around their ankles because they said they were going to do one thing, and we find out they did something different. Since these companies are not covered entities under HIPAA, they don’t fall into those categories, and so it comes back to the Federal Trade Commission and individual state laws around how that’s going to be governed.
It’s concerning. We saw Google Plus get shut down, so we need to make sure we’re appropriately educating individuals about how their data is going to be used, rather than having them just say, ‘Sure, you can have it.’ If you think about the rewards programs that are out there — and I know my d I know my wife signs up for a ton of them because they offer discounts or points — when you register for one, you’re giving these companies the ability to track every purchase you make. Then they turnaround and monetize that information, so they’re making money off the data you’re giving to them freely.
I need to learn more about this, but I agree that we need to find mechanisms in order to provide ready access to patients to their health records when appropriate. If you recall, during one of the Moonshot meetings with [former] Vice President Joe Biden and [Epic CEO] Judy Faulkner, Biden said that patients need to be able to access all of their medical records. And so Judy asked, ‘why would you want that? Are you going to understand it? Are you going to be able to use it?’ That’s my question.
The other thing is, having spent a lot of time talking to a lot of physicians, I’ve found that they may not necessarily want a complete load of 10 or 12 years’ worth of data. If you’re going to a primary care physician, they need to know your medical history if they’re going to take you on as a patient, because they’re supposed to be that gatekeeper. But if you’re going to a specialist — for example, an orthopedic surgeon, to have a knee or hip replacement — there are p pieces they’ll want to have. There are pieces the anesthesiologist who’s putting you to sleep is going to want to have. There are also pieces of it that other people in your care team will want to have, but are they going to want your complete life history, all the way back to when you were eight years old? I don’t know.
In my case, I happen to be pre-diabetic, and my family practice doctor is an internal medicine doctor. He does want to know the history because he wants to track my progress and how well I’ve managed my hemoglobin A1c over time, and I understand that, but those are data points that he wants. He doesn’t want to know when I had my right biceps tendon redone, and he doesn’t want to know when I had the Colles fracture of my left wrist and had it surgically repaired. Those are all data points, but it’s not something I need to drop into his EMR.
The other question I have is around the mechanisms we’re creating for moving this data around and storing it in different silos. I’m reminded of some of the work we did early on in Meaningful Use around medication reconciliation to try to get a good and accurate medication list for the patient. In talking with physicians, we realized that when patients were being discharged from the hospital, they were discharged back to the service of their primary care physician, and the medication list at those points of transfer was only as good as the last provider they saw. The physician practice is going to have a different list because they don’t have the information of what medications the patient was discharged with until that data gets to their practice, and they have to reconcile the medications again.
It’s pretty much the same process. We’re still dealing with silos of data, but we’re looking for ways to update those silos in a trusted mechanism. I think that’s one of the underlying premises of interoperability without special effort — that’s the verbiage that was used in 21st Century Cures Bill. Basically, there are a lot of reasons why we’re having issues.
Gamble: Really interesting. I think the fact that it was a very personal story and it came from Seema Verna carried a lot of weight. But, as you’ve alluded to, there are still a lot of things that need to be fleshed out.
Christian: Let me give you a secret about Seema’s story. That story has become a poster child of patient experience — it gets repeated in this country every day way too many times. However, Seema and her husband — and most of their medical records — are in Indiana. They’re from Indiana. And Seema happens to be acquaintances with our CEO, John Kansky. If they’ve had care in Indianapolis, their records are in the data exchange. Now, I don’t disagree that there’s no easy mechanism for a hospital in Pennsylvania today to request those records be sent to them.
However, there are things at work. You and I have talked before about the Patient-Centered Data Home and the data sharing between the HIEs as one normalized clinical data repository sharing appropriate data with another normalized clinical data repository that enables organizations to match patients appropriately back and forth. We have shared records between Indiana and Colorado, and California and in the other direction to East Tennessee. So that’s in the works. It’s getting better every day, just like everything else we’re doing. But we need to remember: It’s a marathon. It is not a sprint. We tried it as a sprint and got breathless and exhausted very quickly. So we just need to keep digging at it.
Gamble: I’m glad you brought that up. I wanted to talk about IHIE’s Patient-Centered Data Home Initiative. What are the goals for the next year or so?
Christian: One of the goals we had talked about for 2018 was having 35 HIEs exchanging data — not just ADTs, but also clinical records — by the end of the year. I’m happy to say that we reached 40. But it doesn’t go without challenges. We’ve got a group of HIEs in New York that really want to participate. Unfortunately, their consent laws are different than the grand majority of the country. They have an opt-in where patients actually have to sign a consent that they agree to share their data. New York can accept ADTs of patients that may be getting care somewhere else that they have records for, but they can’t share the data back. And so it hamstrings the formative piece of that where we’re going to inform care wherever that patient goes. It’s one of the many thorny things we need to address as a nation — can we come up with a model of consent that works in every care setting?
People who know me think I’ve lost my mind when I start saying, ‘we need an overarching federal law or set of rules that covers these areas,’ because I’m a state’s rights kind of person. I always have been. I believe healthcare is provided locally and needs to be governed locally, but there are different ways of doing that. That’s one of the things the Patient-Centered Data Home does. It requires a legal agreement, but not one that controls the governance of the data itself.
The agreement leaves the governance of the data to the local entities and local HIEs, because we already have agreements with our participating facilities around how we’re going to use the data, what they can do with the data, what we can do with the data, and what we can’t do with it. The local governance takes care of that issue. And if it doesn’t allow the data to be shared externally, then that’s what happens. But most of the time, it allows them to intake data.
The sharing of this data is always predicated upon the treatment component of HIPAA. Because right now, until we get into the expanded use cases which will come with TEFCA, treatment, operation and payment are the three ways that we can appropriately share patient protected particular health information. Most of the health information exchanges in the country are dealing with just treatment, but that gets expanded a little bit when you’re supporting ACOs and the alternative payment models. But once again, it goes back to the local governance of that data.