Pandemic Reveals Public Health Data Infrastructure Shortcomings
The COVID-19 pandemic has made painfully obvious what most people in healthcare already suspected: underinvestment in public health data infrastructure had left the country unprepared to share data efficiently. How did we get here and what is to be done about it?
During an April work group meeting of the Office of the National Coordinator for Health IT, Jim Jirjis, M.D., chief health information officer of the 185-hospital HCA Healthcare, said, “What is really coming out is the cost of not having the kind of interoperability capability we are all envisioning. What we are seeing is an accelerating number of not just states, but municipalities, regions and others that are asking for information through a variety of transport mechanisms, in a variety of data definitions, and it is just overwhelming our ability to respond, even though we want to and are willing,” he said. “The real problem is not having standards in place to make it easy to comply.”
An analysis of health system executive survey responses published in JAMIA (the Journal of the American Medical Informatics Association) in May found that 41 percent said the largest barrier to electronic lab reporting and syndromic surveillance was that public health agencies lacked the capacity to electronically receive data. The study concluded that “digitizing hospital records without a concomitant investment in the IT capabilities of state and local public health agencies contributed to our reliance on a patchwork system of fax, e-mail, and paper to track the spread of COVID-19.”
One of the co-authors of that study is Julia Adler-Milstein, Ph.D., an associate professor and director of the Center for Clinical Informatics and Improvement Research at the University of California San Francisco. She said that in part this problem goes back to some flaws in the HITECH Act, which did not include funding for entities such as long-term and post-acute care, behavioral health, and public health.
“The Meaningful Use criteria required that hospitals be able to do public health reporting, but that created an awkward situation where they had to create exceptions for when your public health agency can’t receive that data. Then you were not on the hook for that measure,” Adler-Milstein says. “It was probably better than not having the requirement in at all, but it wasn’t really effective if you weren’t going to make sure the other end of the handshake was there. From a national perspective, if we want those criteria to have an impact, we need to make sure the public health agencies have the capacity to do the receiving.”
eCR Now
Speaking at the April ONC meeting, Janet Hamilton, M.P.H., executive director of the Council of State and Territorial Epidemiologists (CSTE), said, “Planning for the fall, we feel that electronic case reporting (eCR) is the transformation we need. It provides us the point-of-care test, treatment, and vaccination information, comorbidities and the complete picture of information we need to address this response.”
Someone who has been working on eCR for many years is John Loonsk, M.D., the consulting chief medical informatics officer for the Association of Public Health Laboratories (APHL) and an adjunct associate professor at the Johns Hopkins Bloomberg School of Public Health. He says there is no question that resources for public health have diminished over the last decade, and IT was one of the areas that suffered.
“Another dynamic that is difficult to deal with is that attention is paid to public health infrastructure only during an emergency; you get this big bolus of funds, and it is really hard to build a reliable, sustainable infrastructure that way,” Loonsk says. Ideally, you want the infrastructure to be in use on a daily basis but be able to scale up to handle an emergency.
In addition to all the gaps on the public health side, there are also issues on the clinical care side. Getting public health data reported directly from EHRs has great potential but is still in its early days, and is still only a menu option in Promoting Interoperability, the regulatory follow-on to Meaningful Use. “We find the leverage from that is much more limited,” Loonsk says “Are we really saying you should only get this data in certain states or from certain EHR vendors if the health system customers choose to do it? I don’t think that is the target here.”
Describing eCR as “an informatics problem for the ages,” Loonsk details some of the obstacles. One is that public health is perceived as being a burden on providers and is considered a black hole for data. “One of the reasons they think it is a burden is that they don’ see a lot of return value,” he says. “They don’t get a lot of information back from public health.”
Also, there are differences in what is reportable in different states, and there are many health systems and many public health agencies. “It is fair to say the EHRs only want a single interface,” Loonsk says. “They don’t want to do things differently in every jurisdiction.”
Still another challenge is that things are constantly changing during an outbreak. For instance as the case definition changes, the trigger codes change. “You have to have an infrastructure that can handle that dynamic aspect of it,” Loonsk says. “We have been updating the trigger codes for electronic case reporting on a weekly basis because that is the need.”
Following a two-year pilot project called Digital Bridge, the Centers for Disease Control, APHL and CSTE had just begun operationalizing eCR when COVID-19 appeared. “At the time COVID-19 hit, there was only one EHR company, Epic, that had an operational electronic case reporting solution,” Loonsk notes. “Two others are close now,” he adds. To offer EHR vendors and their customers something to use in the meantime, the partnership created a SMART-on-FHIR-based “eCR Now” app they could deploy immediately. “For an EHR company that does not have a solution, we can offer them a solution with technology they can implement now,” he says. “Their lifecycles for product development can be a year long. We wanted to shortcut that. We released a production version of eCR Now app last week and have had some EHR vendors that have committed to use it.”
At the start of COVID-19, eCR was barely implemented. “We now have over 2,000 sites implemented in just a few months,” Loonsk adds. “It has jumped to a different scale, but we still need that push. One of the reasons providers want to do it now is because it is appealing to them to turn off manual reporting. That is great, but not necessarily enough to get them over the hump when they are being drawn in five different directions because of the COVID activities.”
‘Minimum necessary’
Some public health organizations have had difficulty getting data because there is confusion about what types of data health providers can share with public health agencies during an emergency. “It seems that there is a lot of misinformation out there about what is allowable to be shared with public health when there is an emergency declaration,” said Lauren Knieser, director of emergency preparedness and response for interoperability vendor Audacious Inquiry in an April interview. “I find myself bringing that language out and showing people that public health authorities are in fact able to see information about patients.”
The issue with sharing the minimum necessary data comes into play because there is not a lot of guidance about what constitutes minimum necessary — “in particular when we query across the national networks,” she explained. “Those queries need to be labeled as either treatment queries or public health queries. If they are put out as public health queries, we are seeing that not every organization that participates in the network responds with the documents they have or they respond with only a subset of the documents available. There is a lot of movement in the industry to clarify what minimum necessary means or to enable these queries to go out as treatment queries, because in effect when you are providing information to public health to do contact tracing and outreach, that is part of care coordination.”
The role of HIEs
The COVID crisis demonstrates that in states with strong health information exchanges, the HIE can play the role of intermediary between providers and public health. And perhaps the ONC’s Trusted Exchange Framework and Common Agreement (TEFCA) effort can make public health a high-priority use case.
For instance, the Indiana Health Information Exchange (IHIE) deployed visual data dashboards for the state department of health and public health departments to track important measures on how COVID-19 is impacting Indiana.
The Indiana State Department of Health gets real-time updates of COVID-19 test made possible through the correct testing, coding and data processing of critical information at the time of care and through connecting labs with electronic health information exchange.
IHIE also is strengthening its Notifiable Condition Detector (NCD) tool, which sends daily alerts of reportable labs to ISDH and public health departments. Since the outbreak of COVID-19, 15 new tracking codes have been created for detecting this virus with conditions to trigger alerts; this list may grow. These reporting mechanisms make it possible to predict and monitor the spread of the virus and can prevent more harm and deaths.
Speaking at the recent DirectTrust virtual summit, John Kansky, IHIE’s CEO, said the HIE turned out to be the best single source of data to supply the state for modeling and dashboarding. He said it makes sense that instead of sending an EHR vendor 18 separate requests from one region, 50 state HIEs could carry most of the water. He recommended that as federal regulations come out about data sharing in a public health emergency, it would help to clarify how HIEs can comply with the regulations.
IHIE had to work through some issues to clarify its role. For instance, there was no legal path for any hospitals that were not already participating in the HIE to send data to IHIE because it was not officially a public health authority. “We had to get a letter from our state health commissioner to get ourselves declared a public health contractor,” Kansky said. “There were some things we learned for the future to make these flows from providers to the HIE to public health a little smoother.”
The provider perspective
Also speaking at the DirectTrust Summit, Steven Lane, M.D., clinical informatics director, privacy, information security & interoperability at California-based Sutter Health, discussed interoperability concerns from the provider perspective. “There is a difference between custom or ad-hoc solutions to share data as opposed to data sharing inline as a byproduct of the operational work flows,” he said. “As an EHR user, we have had to do a lot of work to put together reports and reporting mechanisms as opposed to being able to fully utilize standards-based interoperability solutions like Direct that are ready, on the shelf and live in production.”
When the COVID emergency hit, Lane helped lead efforts to get electronic case reporting up and running quickly. In the Northern California region, there is a strong community of healthcare organizations involved in Epic interoperability Regional User Groups (RUGs). They put together rapid cycle implementation process for eCR and worked with Epic to develop an accelerated implementation plan for COVID-19 case reporting. “In California there are 41 organizations that use the Epic health record, 29 of us connected to eHealth Exchange and nine connected to Carequality, so this was a very ripe opportunity to leverage existing technology and legal agreements in place to move this forward quickly,” he said. “What had previously taken two to three months was reduced to three to four days.”
HealthPartners Institute, the research arm of HealthPartners, a Minnesota-based integrated health system, participated in the Digital Bridge initiative.
Richard Paskach, senior director of research project operations, informatics and technology, says eCR was a great project to start with. “So many of our public health reporting processes, although aided by the EHR, are very manual processes,” he says. “By leveraging technology provided by the EHR vendor, we are able to automate that process. In order to do that we needed all three parties at the table: the provider organizations, the EHR vendors, and the public health agencies.”
Although it wasn’t chosen to be one of the four Digital Bridge pilot sites, HealthPartners is collaborating with other care delivery organizations in Minnesota to build out a federated system to offer the Minnesota Department of Health access to de-identified, aggregated data to examine trends in COVID cases and testing, says Malini DeSilva M.D., a HealthPartners Institute research associate and a staff physician in HealthPartners’ Department of Infectious Diseases and Travel and Tropical Medicine Center.
Like others interviewed for this article, DeSilva notes that the data streams and reporting requirements vary from state to state and there are differences within each state on who is collecting that case report information – whether it is local public health or centralized at the state level. “All those differences make it difficult for the CDC to be the organizing body,” she says. “The lack of public health funding over the last 20 years has really contributed to the lack of ability for different states to maintain good health IT infrastructures. I think that is one of the thing that hasn’t been discussed as much — what kind of funding resource issues have contributed to these problems?”
Others also see addressing the funding gap in a sustained way as crucial. Speaking to Healthcare Innovation in June, health IT pioneer Micky Tripathi, Ph.D., chief alliance officer at population health management solutions company Arcadia, said the pandemic “has exposed a whole bunch of things in the U.S. that have pointed to huge gaps in public health infrastructure that other countries don’t have, [especially] when looking at what Germany and South Korea have been able to accomplish. That’s because those countries have a robust, well-funded, and well-structured public health system. We have huge gaps here, despite having invested $30 billion in EHRs. Before a year ago [few] people knew what public health case management means. Now, everyone knows what it means. What worries me, though, is that our interest in this will drop off again until the next pandemic comes.”
UCSF’s Adler-Milstein also notes that health equity needs to be part of the public health infrastructure assessment. “We did find an overlap between where there is some of the highest COVID burden and where there is a higher likelihood of reporting this barrier,” she says. “It comes down to the fact that the communities that are hardest hit are the ones that have the fewest resources and therefore have the least technical infrastructure. If we are thinking of solving this problem of how to best deploy resources, we should be sure those do go to under-resourced communities that have the greatest technology gaps.”
