HIStalk Interviews Mariann Yeager, CEO, The Sequoia Project
Mariann Yeager is CEO of The Sequoia Project of Vienna, VA.
Tell me about yourself and the organization.
I’ve been in health IT virtually my entire career. I got my start years ago working for an insurance company, then a clearinghouse, and have been in health IT ever since. I got into the interoperability space, working with the ONC on the Nationwide Health Information Network project, which led to the formation of this particular project 10 years ago. We were formed as a non-profit, public-private collaborative. We are solely focused on advancing interoperability for the public good and working in collaboration with government to offset the burden of what they’re trying to accomplish.
Is the lack of interoperability a technical problem or a business problem?
All of the above. There are policy, business, and technical issues that impede the ability for information to flow seamlessly. That’s where we focus our energies at The Sequoia Project, identifying the issues that are impeding progress and systematically addressing them one at a time.
What other industries provide a model for competing organizations exchanging information about their shared customers?
Certainly we can learn a lot from financial services, telecom, and banking. In fact, as we were exploring and preparing to launch Carequality in 2014, we researched how things operate in the ATM and ACH world, where they have a non-profit that brings together different stakeholders to develop rules of the road so that ACH networks interconnect. Carequality was modeled after that type of activity. There’s a lot we can learn, but in some ways, what we’re dealing with is a far more complicated transaction than a banking transaction, so there are a lot more issues to unpack.
Arguments have been made that healthcare participants should be paid for sharing data instead of being penalized when they don’t. Is the sharing model yet to be determined?
From where we sit, there needs to be a baseline of technical and policy capabilities in place to interconnect our ecosystem.Then there needs to be a value to exchange and then an impetus to exchange. The value to the exchange usually comes from the value of the information and whether it offsets some administrative burden. Is there a return on investment, for instance, or does it somehow contribute to some other good? That’s the first thing to look at and explore — the value of exchange.
Then the impetus to exchange is, how do you get people to use the capabilities that exist? Again, it’s really derived from value. You can have opportunities to have better information more readily accessible and that makes the clinician’s life easier, makes supporting value-based arrangements easier. The impetus to change can also come from governmental mandates. What we are seeing in our space now is a combination of all the above, which creates an exciting opportunity to advance the ball within interoperability, because the stars are aligning in terms of all these things coming together.
How will ONC’s information blocking review work under a complaint-based system where it’s often a big health system that isn’t sharing patient data?
We’ve seen tremendous progress in healthcare organizations interconnecting for treatment purposes, of course, starting with health systems. There’s a tremendous volume of information being exchanged between health systems and now increasingly across the continuum of care.
We have to take into account the maturity of the platforms that these other care settings are using to support their clinical environment, and then the other actors that have a need for health information but that aren’t even participating in the network. It makes it a lot more difficult if you’re trying to approach point-to-point arrangements versus if you’re a public health agency, a health plan, or a small physician practice. If you’re able to connect to a health information network, that is the mechanism that allows you to access information. Then of course if that network interconnects with other networks like to Carequality or an ONC-endorsed TEFCA framework, that’s where we’re going to see the seamlessness. I think it’s a reflection of, in part, the maturation of those capabilities, the ability to participate in networks and along that life cycle.
Then we can’t even begin to speculate how ONC might and OIG may be approaching compliance. With respect to the different actors, health information networks, health IT developers, healthcare provider organizations, et cetera, that really remains to be seen from where we sit. It boils down the very practical issues that are impeding exchange — different interpretations of law, different interpretations of policy, different interpretations of what is even treatment-based exchange, care coordination treatment. We’re getting greater clarity around that. For us, it’s much more nuanced
What efforts are you seeing to connect public health to the healthcare system?
It’s pretty ad hoc right now, for the most part. Everyone realized that in the midst of a pandemic is not the time to try to create an interconnected health IT ecosystem that the public health is plugged into. But there are tremendous opportunities to leverage existing infrastructure for that purpose. Naturally there are regional statewide HIEs and others that are doing interesting things to support public health and make it easier for public health agencies to get the information that they need.
Electronic case reporting is getting significant uptake and being supported both within nationwide networks and with others across and between networks. That is just an example that if you have a discrete use case and you have a trust framework in which to support it, that capability exists. This is an area where we think that TEFCA is going to play an important role in advancing this in a much more robust way for more public health capabilities.
Can you describe in simple terms the impact that TEFCA and Qualified Health Information Networks might have on consumers and providers?
The 21st Century Cures Act was passed into law in December 2016. It directed ONC to develop and support a Trusted Exchange Framework and Common Agreement, TEFCA, to support the exchange of information between different, disparate health information networks. ONC has been working since then to develop key elements to enable that to occur. They were given the ability to work with a private sector organization to help them implement the different components of TEFCA to operationalize it. The Sequoia Project was selected to serve as that private sector organization, an official designation as being a Recognized Coordinating Entity. We are working with ONC to develop the agreements, the implementation guides, and the onboarding process that would enable networks that want to receive special government endorsed designation as a TEFCA Qualified Health Information Network, or QHIN, where we would work to facilitate that process and do the onboarding and designation for those that comply.
How do the various elements of trust fit in with the ability to exchange information, including one provider not trusting another’s data?
It’s a policy issue, and there is a technical element and workflow element as well. The idea of having trust agreements and trust frameworks is so that a participant — a healthcare organization or participant or actor in one network — can rely on the information they’re getting from someone else. That it comes from a trusted source, that they’re abiding by the same rules of the road, and that the information is only going to be requested in accordance with certain rules of engagement. It will be appropriately protected. That is very foundational before someone would even be willing to share information at all.
The other part of that is, can you trust the information itself? Does the information have value? Is it semantically valid? We are doing a lot of work on that at The Sequoia Project through our data usability work group, which includes a group of subject matter experts, guests from across many different stakeholder groups, to try to define in a more clear way how data should be codified to improve the value and meaning of the information when it’s exchanged.
Is a national patient identifier essential to the process?
The issue around the national patient identifier is multifaceted. Some believe that it would be the linchpin to solving interoperability, while others say that it really has value for a small portion of identities that we can’t match through other means. At Sequoia, we tend to be practically oriented about what can we do today to improve matched results and increase it over time. We publish white papers to that effect and refresh and update white papers we published years ago. The use of secondary identifiers, and adding that onto the other identity traits used for matching, can be quite effective. We think that there’s a lot of value in continuing to look at methodologies like that. We tend to meet the market where it is and set our sights on what we can do to incrementally improve progress over time. A unique health identifier has its place, but there are also things we can do today to make tremendous progress. We look at that very carefully,
People often misunderstand HIPAA or misrepresent it to support what they want to do. Is the 1990s-era rule a barrier to what you would like to accomplish?
In some cases, HIPAA is very much an enabler, because it is a standard for privacy and security that we can leverage and it is well understood and established. In other cases, HIPAA predated most of the digitization of healthcare, and there are aspects of it that are, as you said, misunderstood or misinterpreted. Maybe it is an area that needs further clarification.
A good example that we saw in the pandemic was that healthcare organizations were reluctant to share summaries of patient records with public health agencies. They worried about exceeding minimum necessary. OCR issued guidance clarifying that if you receive a request from a public health official, you can trust that it’s for the information that they need. It was still an impediment that was more of a policy interpretation and a risk tolerance. It was more of an impediment in terms of interpretation and understanding. Trying to get that kind of clarity in the midst of a pandemic is quite challenging.
People who read about FHIR and interoperability APIs may think we’ve solved the problem, but many of us still have personal experience where a new provider is starting with a blank slate. Is consumer education needed to set expectations for information sharing and blocking in a complaint-based system?
FHIR, APIs, and the emerging role that apps will play in enabling consumers to access their health information are all tools in the toolkit. If you think about it from the perspective of individual access, you have obligations now to share information with individuals. It’s an imperative. We are working on how to operationalize that.
A good example of that is the work that we are doing with the ONC on TEFCA and those organizations that participate in TEFCA, others as a QHIN itself or as a participant or someone connected to QHIN itself. There’s an obligation that if someone requests their information and if you have information about that person, you must share it unless you are not permitted by law to do so, or somehow breach privacy or security.
We look at not so much information blocking as a compliance paradigm, which it certainly is, but if you turn it on its head, it’s an information exchange paradigm that TEFCA and other activities can reinforce. The more we address impediments to information exchange, the more we get down to the brass tacks of how to make this work seamlessly. Individual access is an excellent example, because we can support that on a wide scale basis today using the very standards and protocols that have existed for a long time and using new standards and protocols such as FHIR. The issues often boil down to policy. That’s really what we’re trying to unpack with respect to our work on TEFCA.
ADT notification is a lightly heralded success that took a lot of effort. Are you seeing significant uptake?
ADT notification is a great example of capabilities that were born out of market need and demand organically. You see so many health information networks supporting those capabilities, and have that reflected in regulation as well, as a way to demonstrate meeting certain measures with CMS. It’s an exciting paradigm to witness. We hope that the work that we foster here in the private sector can be pointed to in other ways. That’s why we work very much at Sequoia with boots on the ground, trying to resolve issues that have practical implication and get some traction that hopefully reinforces and supports policy goals.
What will be the most important interoperability issue over the next two or three years?
I would like to see us move beyond the sharing of information for treatment purposes. We’ve seen tremendous progress and very much take pride in what we, as a collective industry, have done in that regard. We can expand that to support other use cases, such as the exchange of information for payment, for healthcare operations, to individuals, and for public health purposes. I am very positive about our ability to reach that. We have good momentum. We are getting good traction. I think we will start to see some real progress in that respect.
Do you have any final thoughts?
I would like to reflect on the past 10 years and our journey here at Sequoia. We started in back in 2012 with the idea that there would be a need for an organization like us — a non-profit, public good-oriented organization; public-private; working to advance the ball on interoperability by solving practically oriented issues. We have seen the ability to make strides not by going it alone, but by having a broader community of stakeholders working with us side by side. We attribute the progress and our ability to have incubated and launched these initiatives and the work we’ve done with interoperability matters in TEFCA to the tremendous support that we’ve had from stakeholders. I just wanted to acknowledge and be thankful of that.
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