Fall 2023

Data Usability Taking Root
By Susan Chapman, MA, MFA, PGYT
For The Record
Vol. 35 No. 4 P. 12

An Initiative to Make Health Care Data More Useful

With the health care industries’ adoption of EHR technologies across the United States over the last decade, an ongoing issue has been data quality and usability. In July 2023, The Sequoia Project, a nonprofit, advocacy organization for nationwide health IT interoperability, announced a new initiative, Data Usability Taking Root, with an eye toward making health care data more useful. AHIMA cosponsors the project, which has been in the planning stages for several years. Over the past two years, The Sequoia Project and AHIMA have solicited public input and enlisted the engagement of 266 organizations and nearly 400 subject-matter experts.

The Problem
Digitizing EHR information into a correct and usable format is a longstanding problem in health care. “The move from paper health [records] to electronic health records was accelerated over the past eight or 10 years, thanks to financial incentives provided by the federal government,” explains Mariann Yeager, CEO of The Sequoia Project. “At the time, it was important to get technology into the hands of providers and get them accustomed to using it. Because of that, there wasn’t necessarily a standardized way to express the data.”

The health care industry has made progress over the past decade not only in digitizing health records but also in enabling EHR systems to interconnect, making it easier and more seamless to share information between and among health care settings. Such advances have improved care coordination. “We’re very good at connectivity and the ability of all the places patients receive care to share records. That has occurred in an unprecedented way,” Yeager acknowledges. “But when I explain the usability issue, I tend to use the analogy that at this point, we have indoor plumbing, but the water is not potable. The content—the substance of the data that is being exchanged—is useful and can be computable, but there are a lot of gaps that limit the meaningfulness and usability of the information to the end clinical user.”

Didi Davis, vice president of The Sequoia Project, offers an example of how moving digitized data can make it difficult to use. “A patient has a complete blood panel done, a CBC. There are many components that make up the CBC,” she explains. “The clinical team wants to see the data from that test grouped in a certain way. If a system puts those pieces of information in alphabetical order, it puts them into different places, which is not very useful because the clinician making the decision on the patient’s care has to hunt for the information they need.”

Other aspects of health care are also affected when digitized data are not in a usable form. “We also need to consider information technology and coders, that side of the equation, as well as those engaged in public health,” Yeager adds.

The Sequoia Project has identified a number of impediments and prioritized addressing each of them. Three main areas of priority are information that’s exchanged between providers, data shared for public health purposes, and data sent from health care organizations to patients. “We want to achieve a secure, interoperable exchange of information that really is transformative. Effecting change requires more consistency in how data are structured, presented, and organized,” Yeager says. “Some of those changes would need to be made by the health IT developer, some of them would have to be configurations made by the health care provider, and some of the process could even be workflow oriented. It is a pervasive issue that is going to require coordinated changes and evolution over time.”

Implementing Change
In December 2022, The Sequoia Project published an implementation guide to help end users prioritize and execute solutions for their specific usability issues. In the first iteration of the guide, it named six specific topics about which it provided guidance: data provenance and traceability of change; data integrity, format, and trust; effective use of codes; data tagging and searchability; reducing the impact of duplicates; and effective use of narrative for usability. The guide explains how each of the six topics is important to providers, the public health community, and patients or consumers, as well as to other stakeholders such as vendors and HIM staff. For instance, data provenance and traceability of change would allow public health officials to leverage the data’s history in order to identify duplicate data. Patients could use this information to determine when information was captured during their journey through the health care system. By using consistent identifiers, providers could more readily recognize duplicates. Data tagging makes it easier and more efficient for consumers, public health community members, and providers to search for pertinent information. The guide offers a clear, step-by-step approach to putting its recommendations into practice, including identifying priorities, tracking progress, taking an incremental approach, and other points. According to The Sequoia Project’s Data Usability Taking Root Overview, the Taking Root initiative will focus on building a community of practice, and Sequoia will provide technical assistance and testing tooling and services to the community to enable change and improvements over time.

“The whole Taking Root movement is to keep the implementation guide from just collecting dust on a shelf, but instead to actually having users think about usability in all IT projects and build a community of practice,” Yeager explains. “For instance, by reducing duplicates, the organization could also reduce the number of queries that get generated.”

There are many EHR vendors, and both Yeager and Davis believe that so many different EHRs could play a role in the usability issue to some extent. “But even if you only had three EHR vendors, and each health care facility did things differently, a collective solution is still required,” Davis says. “There are so many parties impacted, and getting everyone to agree is important. As an example, a number of hospitals across the state of Texas may have the same vendor system implemented in multiple sites, but the software is not configured the same way in each location. Or the hospital or other system may not even know they have the capability of changing their software to suit their needs because they never asked the vendor. They took the software that was given to them, and they thought that’s the way it had to be. Some of this is just raising visibility. We’re trying to empower those users to also make sure they understand how to get the best use out of what they have.”

“Some of that is organizations’ navigating their own decision-making because they’re just tailoring the EHR for their particular needs, and the software isn’t enabling everything they need,” Yeager adds. “The downside of an interoperability world is if the software is customized in a way that doesn’t work with other technology, you end up with issues.”

While a significant amount of solving the data usability issue has to do with organizations and patient care, the needs of the public health community are equally significant. “Let’s say somebody wanted to see everything about a COVID diagnosis on a particular patient,” Davis says. “There are ways that you can tag specific data that are exchanged through what are called CDA documents—clinical document architecture—a computerized way of being able to pull together a large amount of information. If you had a discharge summary narrative that a clinician dictated that was specific to this individual’s COVID diagnosis, it would be nice if you could tag that narrative to say this was the COVID encounter for this particular patient. That way, if there is someone searching the narrative for public health, future research, or something exchanged more ubiquitously than research, if the discharge summary could be tagged, even though the information is not discrete, it could then be discoverable and usable.”

The Sequoia Project’s Partnership With AHIMA
The Sequoia Project’s partnership with AHIMA is a synergistic, collaborative relationship. “Data usability is a central issue to AHIMA and their community. They wanted to go forward with us, hand-in-hand, to elevate the work we’re doing,” Yeager states. “They’re actively engaged in this project and support us as we move forward, and there are several things that we’re able to do because of our partnership. At the national level, AHIMA is convening those who want to implement and support the implementation guide we published. They also cohosted a data usability summit, along with MedAllies and Smile Digital Health, this past September that brought our group together in person to start working out what implementation means in practice and what the elements of this guidance are that can be implemented. They are our partners in the truest sense of the word.”

The summit marked the first time the group met face-to-face, which both Yeager and Davis agreed was very productive. “We found that the kind of discussion you’re able to facilitate in person is more working conversations. There was some level-setting, and we walked through the guidance in detail,” Yeager explains. “We also acknowledged that we were addressing the right points. One of the biggest takeaways was that everyone was going to go back and look at the guidance to see how it applies to what they’re currently doing.”

Davis adds, “I think that the biggest and most substantive takeaway for me was that there are intentional commitments to improve data usability. There were many other takeaways, of course. It was great to see the energy in the room because everyone fed off each other but also energized each other. The goal was to get everyone in person to think about some of those things we need to provide as technical assistance.”

One form of technical assistance The Sequoia Project offers, in partnership with AHIMA, is the provision of tools that could be utilized simply. “An example of those tools is a checklist that a hospital can follow to enable data usability. Within the organization, they can look at some things they should be considering. The checklist helps prioritize which of the main data topics around usability are the highest priority for them. They can ask themselves if that topic is something they want to phase in over time. So, we discussed starting to talk about how to actually implement something on an ongoing basis, help empower organizations to think about their priorities, and allow them to have all their questions answered. That way, they could return to their organizations and determine what pace they need to set for themselves and how to measure results with their peers to show forward progress.”

The group plans to continue the discussion through monthly roundtables in order to continue advancing their work. “We’re basically building a community of practice,” Davis says. “It’s one thing to define priorities; it’s another thing to put them in place, and then we measure progress based on actually fulfilling and bringing to fruition in a real-world environment what was determined. I think having that group together has reinforced that sense of community around this issue. We need that community because one organization cannot champion and improve interoperability alone.”

The Sequoia Project was invited to present at AHIMA’s annual conference in October 2023, where Yeager and Davis held a three-hour workshop on data usability. “Not only are they partnering with us to evangelize how to socialize the data that are out there but AHIMA is also trying to get feedback from their community for future work. They’re not only committed to doing this with us for the Taking Root initiative but they’re also working with us to develop the second iteration of the implementation guide, which will include the items we could not address in the first version. We can’t solve the problem for an entire industry overnight. We have to take baby steps, and feedback as we move forward is integral.”

Measuring the Impact
The central point the group hopes to measure is the impact its work is having on the usability issue. “It’s a hard thing to measure,” Yeager concedes. “Measuring conformance to the rules should improve the clinician and end-user experience overall. However, this is a long-term initiative, not a one-, two-, or three-year endeavor. The Sequoia board of directors, which prioritized this work, was very clear that this may take a decade to solve, and we’re in it for the long haul. We know it’s something that is absolutely essential for all of us to benefit—from patients to caregivers to public health officials to stakeholders. So, we need to do it and do it correctly. I remind people that sophisticated health IT systems, artificial intelligence, and clinical decision support are all wonderful things, but if the data quality and usability are not there, none of that works. It’s very important and the foundation for any interoperability to be useful.”

A Call to Engagement and Expansion
Now embarking on its second decade, The Sequoia Project welcomes new members who share the organization’s commitment to advancing health information exchange implementation across the nation. The nonprofit is also open to adding new health IT interoperability initiatives. “We’re always open to exploring new partnerships and initiatives,” Yeager says. “The Sequoia Project’s work takes the form of independent initiatives, and we’re an ideal home for projects that require a collaborative environment in which many entities with differing perspectives can work productively together. We have the ability to provide the sustaining management services and governance support required to allow new initiatives to grow and succeed. What is especially beneficial is that our initiatives work independently but also draw upon each other’s perspective and expertise, and that is great for everyone.”

— Susan Chapman, MA, MFA, PGYT, is a Los Angeles–based freelance writer and editor.