Nearly seven years ago, The Sequoia Project was chartered to advance the implementation of secure, interoperable nationwide health information exchange. Since then, two of the group’s biggest tasks—managing the eHealth Exchange, which has become the largest health information network in the U.S., as well as supporting the Carequality initiative—has put The Sequoia Project right in the interoperability spotlight.
Starting last year, The Sequoia Project updated its corporate structure so that it has two distinct subsidiaries, one for eHealth Exchange and one for Carequality. Following the restructuring, the organization continues to bring together industry and government with the aim to help solve critical interoperability challenges. One of the new initiatives that it now backs is the Patient Unified Lookup System for Emergencies (PULSE) health IT disaster response platform, which is designed to support healthcare professionals and first responders caring for displaced individuals or volunteer healthcare workers who are deployed to a disaster area outside of their normal health IT environment.
Mariann Yeager, CEO of The Sequoia Project, recently discussed the organization’s recent progress, and interoperability issues more broadly—such as information blocking, trust agreements and getting providers connected to networks. Below are excerpts of that interview.
Looking back on the year that was, what were some of the nationwide interoperability trends that you believe were most significant?
I think it’s just been the incredible uptake in the connectivity and utilization for what I believe is the backbone of interoperability in the U.S. We saw that through the eHealth Exchange, and also through the interconnectivity among networks with Carequality, but also through other initiatives supported by other organizations, such as SHIEC [the Strategic Health Information Exchange Collaborative] and its work with the patient-centered data home; and DirectTrust, as there has been an uptick in Direct secure messaging. What’s so compelling is that we will see this more and more in our day-to-day lives, and that’s what most excited me about 2018, and the opportunity that comes in 2019.
In terms of connectivity, and being able to exchange high-quality, valuable data and use that data at the point of care, there still seems to be a way to go before that happens. Are you more bullish on where things stand or concerned at the slow progress?
Well, it is progress. We all want ubiquitous and seamless health data sharing, but it takes time to get there. In 2018 we saw an accelerated uptake; a lot of the early work from 10 years ago with digitizing the healthcare environment took some time to do, but now we are interconnecting these different healthcare settings. We are seeing that there are still a good number of providers, more on the ambulatory side than the acute side, who aren’t even part of the health information network. You can’t partake in interoperability if you aren’t connected.
Obviously that’s the first step, and then the next stage is making sure those connections are established and can start being used. Once clinicians are relying on that information, it’s not a surprise that they’ll have additional expectations and improvements to make the data more usable. That’s where we are now; there is enough utilization of the connectivity that has been established that the user community has a desire to see it improved. This is all part of the maturation progress. Rather than seeing that as a negative, we see it as an indication of progress.
Can you explain the PULSE initiative in some more detail, and how it’s been used with some of the natural disasters we have seen in the past year?
PULSE was incubated by HHS [the Department of Health & Human Services], and through grants and contracts, the agency worked with the state of California to implement it. It’s a portal that allows disaster healthcare volunteers to treat individuals who are displaced and can’t seek care in a normal care setting—maybe they are seeking care in a shelter or tent. So it allows those volunteers who are not accessing their EHRs, or may not even have those rights at local practices or hospitals, and it allows them to get basic demographic information from the patient so they can search for their records from the places they have received care. Then, they are able to then pull back and retrieve critical information about medications, allergies, and problem lists, so they can use the information to treat that person in the shelter.
The Sequoia Project got involved in late 2017 and then more in 2018 when the fires broke out in the fall of 2017 in California. [Folks] out there were trying to establish connections, provider-by-provider, and we said, wait a minute, there is this national network—the eHealth Exchange—so why don’t you connect PULSE in California to the national network to get access to information that’s maintained by other provider organizations. And they did.
And then in January 2018, HHS really felt that PULSE had grown well beyond a proof of concept—it became a part of disaster response—so that became a new initiative supported by Sequoia to take PULSE and expand it nationally. We formed an advisory council with experts from the disaster response community, and government and state agencies, to advise and help shepherd this. The eHealth Exchange also continues to support the disaster response efforts for the fires that occurred in 2018, so the team has been providing subject matter expertise and support. We are also working with other states to help them understand what it would take to implement PULSE in their respective area.
How would you sum up your thoughts about information blocking, which has become a major issue in this industry?
Information can be exchanged when there are common expectations—meaning the parties trust one another, that there are common expectations for how things will work technically, what they do with the data, the purposes for which you can exchange data, and also around security protocols, and the differences in business models and business practices.
We hear that information is impeded if there is not that common understanding and acceptance about the rules of the road for which we will exchange information. That’s why we have seen activities like the eHealth Exchange, which has a trust agreement that all participants abide by. That has level-set expectations in an equitable way. Carequality also extends a trust agreement among networks. In our experience in supporting these activities, it is very nuanced, and sometimes it’s just a lack of understanding of what’s appropriate.
We have heard anecdotally, mainly from policymakers, that they hear concerns about certain parties refusing to share data or [only have] certain methods for sharing data, and from our perspective, we think you need to facilitate a discussion so there is a common understanding of what’s appropriate practice. By then you have something like whitelisting for security—is that information blocking? There is a disparity and we think coming to a common understanding will be informative.
So in your view, can information blocking really be defined accurately?
No one really knows yet. We understand that [the feds] are supposed to define what is not information blocking. And really, it’s about being equitable and not treating one party different from another who has comparable capabilities and relationships.
We also have a new initiative, called Interoperability Matters, which stemmed from realizing that there are lots of facets of interoperability, with different groups and initiatives looking at different components and technologies. We realized that we needed to have a venue to be able to work together to understand the different perspectives around these interoperability challenges, and around specific implementations. So this initiative is a coordinated effort where you bring together stakeholders in the private sector and in government, agree upon how to implement and roll out new interoperability capabilities in the real world, and try to tackle the tangible issues that you have to solve.
Information blocking is a great example of this need; there won’t be consensus among all the different parties, but wouldn’t it be valuable to have a forum in which different stakeholders share their different perspectives, and come to an understanding about what the real-world implications are? And that level setting will make us all more informed when each group comes up with their respective comments.
What are looking forward to most in 2019?
I really do envision that in 2019 we will be continuing to deploy a full rollout and it will erase all doubt that interoperability is not achievable. It’s happening today; it’s a process and we are making incremental progress. I think the [year ahead] will erase any shadow of doubt that it isn’t doable.
