“I've often felt like during the pandemic we were thrown into a river swimming upstream and IT was our biggest failure holding us back by our ankles, and I think we have a real chance to do this better moving forward.” That was an observation of Anne Zink, M.D., a practicing emergency medicine physician and chief medical officer for the State of Alaska. She was speaking during a May 13 meeting of the Office of the National Coordinator for Health IT Advisory Committee (HITAC) focused on public health.
The ONC HITAC has created a Public Health Data Systems (PHDS) Task Force charged with identifying and prioritizing policy and technical gaps associated with the effectiveness, interoperability, and connectivity of information systems relevant to public health.
The PHDS Task Force will focus on surveillance systems, infrastructure improvements, health equity, clinical engagement, research and innovation, educating and empowering individuals. It will also identify characteristics of an optimal future state for information systems relevant to public health and their use.
The task force kicked off May 6, and will meet 11 times before presenting draft recommendations to HITAC on July 14.
The full-day HITAC meeting brought together public health leaders to help identify gaps in public health data infrastructure.
Zink, who is also president-elect of the Association of State and Territorial Health Officials (ASTHO), was one of several front-line executives speaking on panel discussions and describing some of the frustrations experienced with public health data infrastructure’s long-standing capacity challenges and lack of interoperability made even more obvious the pandemic.
Zink noted that you can travel around the world and put your credit card into any ATM machine and get out currency from your bank. “We have ways of doing secure data information exchange worldwide that cross boundaries,” she said. “Yet I could not get my state lab to be able to send data over to my [epidemiology] team without significant effort.” When the pandemic hit, the State of Alaska put a ton of time and effort into trying to boost its IT systems connecting within the state. Nevertheless, she said, they ended up having to place National Guard workers in their state lab just to enter data into myriad systems.
“We need to make sure that anyone who receives healthcare dollars — gets Medicaid or Medicare — has a way to share that data that is benefiting patients,” Zink added. “We need a system that serve patients instead of patients serving systems, which is what is happening now. The cost of inaction on interoperability is a moral failing as well as a challenge to our staff or budget and a cost of life.
Challenges in New York City
In her written testimony prepared for the HITAC meeting, Annie Fine, M.D., an epidemiologist and pediatrician, described some of the key challenges New York City faced during the height of the pandemic. Fine serves as co-lead of the Epidemiology and Data Unit, Surveillance and Epidemiology Incident Command System COVID-19 Response in the NYC Department of Health and Mental Hygiene.
A main challenge was the unprecedented volume of data that public health data systems were expected to handle. Prior to the pandemic, the New York City Department of Health received approximately 5,000 electronic laboratory reports per day. During the pandemic, it has received more than 100,000 lab reports per day. “Our data processing systems and surveillance database were simply not set up to process this volume of data and have strained under the load. A substantial number of hours have been spent working on shoring up these systems,” she wrote.
Second, there was a need to rapidly onboard new sources of reports – for example, point-of-care tests performed in outpatient clinics and provider offices.
Third, there was a predictable demand for several critical data points that have never been easy for public health to collect and for which there is no automated way to get the data, she said. Public health has relied for many years on methods such as individual case investigation, which includes patient interview, and manual medical record review, to gather these data points. One example would be patient outcome and severity of illness, including whether a patient was hospitalized or died of their illness.
Fourth, critical questions about the clinical and epidemiologic characteristics of the virus arose, but there was no efficient way to rapidly design and deploy simple studies to find answers, Fine noted. Some examples include questions about asymptomatic infection, transmissibility in different settings, and the risk of airborne transmission.
Finally, Fine wrote, there has been and continues to be a need to focus on the urgent issue of equity, and to address the unacceptable disparities in the impact of the pandemic on people of color, working people, people who live in poverty and other historically disenfranchised communities. “The way we in public health collect and analyze data must be improved to capture data in a more meaningful and accurate way, including how people identify themselves with regard to race and ethnicity, and to enable us to proactively identify inequities –and to target and measure the effectiveness of our efforts to reduce them. It is unconscionable for public health not to have this information, not to share it with the affected communities and not to do everything we can to respond and work with leadership and partners to mitigate the impacts and work to prevent future inequitable outcomes.”
In making recommendations to ONC, Fine noted that the demand for data to be transmitted from local health departments to state and federal partners is intense, and a huge amount of time is spent by local health department staff in manually entering data into complicated electronic forms, or in mapping data from local systems that do not necessarily harmonize well to federal systems. “During emergencies, the primary data points collected and aggregated at the national level should be as simple as possible, clearly defined and standardized across jurisdictions so that they are comparable. This is not a small effort but needs to be undertaken now ahead of another public health emergency. Data points as simple as cases, hospitalizations, and deaths –or more complex ones such as percent positive, require definition and standardization.”
As we move to more automated collection and processing of electronic data for public health surveillance and response, Fine added, it is essential that data collected at the time of the patient encounter with the clinical or lab sector be high quality, complete and standardized for transmission into analyzable surveillance databases to provide usable information for detecting and addressing disparities in disease incidence and outcome.
Fine said that what is desperately needed is to improve the linkages between public health data systems and electronic medical records. Important data points such as whether the patient was symptomatic, what level of care was needed, whether hospitalized, severity of illness, length of stay, presence of chronic underlying conditions, and demographic data such as race/ethnicity and occupation reside in EHRs and should be accessible to public health for epidemiologic purposes, she wrote. “This can be achieved, in part, through advancement of electronic case reporting, but also, the ability to run matches with and/or automated queries of electronic health record aggregate data repositories would vastly improve our ability to understand the spectrum of disease, risk factors for severe outcomes and to better predict and manage the burden on health care facilities. Even something as simple as enabling local public health investigation staff to access patient level data via portals in electronic health records for case investigation, rather than having to request individual medical record retrieval, would enhance efficiency greatly over current methods.
Lessons from Louisiana
Joseph Kanter, M.D., M.P.H., state health officer for the Louisiana Department of Health, said the state’s experience with repeated severe weather events led to strategic investments in health information infrastructure that have bolstered responses to public health threats in the years since. In his written testimony, he described one such example as the development and deployment of Louisiana’s Emergency Support Function-8, or ESF-8, Portal, a home-grown communications system that provides for bidirectional communications with all hospitals, nursing homes, assisted living facilities, intermediate care facilities and other facilities licensed by the Department of Health.
Separate modules exist for bed availability and surge capacity, operating status including generator and fuel status, security status and situational awareness updates. Formal rulemaking in Louisiana has established a requirement for daily updates from most licensed facilities, of which about 1,500 are currently enrolled comprising approximately 4,000 individual users.
During the COVID-19 response, Louisiana’s ESF-8 Portal proved invaluable in three key areas, Kanter said. First, as cases and hospitalizations rose exponentially in March 2020 threatening the capacity of the acute care system, the real-time hospital census information allowed for effective load-leveling of patient volume throughout the state. It also allowed for predictive modeling of short-term hospital and ICU census spikes, which informed critical investments in alternative care sites and auxiliary licensed care providers. Second, the Portal afforded real-time visibility on usage and supply of ventilators throughout the state, allowing targeted redistribution and informing emergency procurement decisions. “And third, as the data requests by HHS on hospitals evolved throughout the pandemic we were able to integrate additional data fields into the Portal, sync with the HHS TeleTracking platform, and save hospitals the burden of duel reporting.”
Areas for improvement in Portal capability, Kanter added, include interoperability with electronic medical records to alleviate the need for manual data entry by hospitals and other facilities, and improved end-product GIS mapping capabilities.
Kanter also said that some of Louisiana’s biggest data challenges during the pandemic involved the need to rapidly scale up and staff up its information system operations. “Years of defunding have trimmed public health departments like ours to leaner organizations not easily able to surge when a crisis emerges,” he said. “The data systems we relied on during the pandemic required significant staffing resources to onboard new users, troubleshoot technical problems, and conduct provider relations and quality-assurance checks on incoming data. We found the quality and timeliness of the data entered into Louisiana’s ESF-8 portal, lab management system and IIS suffered when staff were not available to monitor users’ inputs and quickly address insufficiencies.”
Interoperability between providers and disparate public health systems remains a challenge as well, he said. “Epidemiologic, laboratory, immunization and emergency preparedness systems rarely connect with one another or leverage others’ connections with provider and hospital electronic medical records. With the medical records of an overwhelming majority of hospital inpatients in Louisiana being maintained by one notable large electronic medical record system, there exists great opportunity for this type of connectivity,” Kanter added.
“There is no need to wait for an emergency to build interoperability. We are particularly excited about CDC’s Electronic Case Reporting (eCR) program and are eager to implement it more broadly. By leveraging the wide electronic medical records coverage throughout the state and building smart automated query connections between medical record systems and our Office of Public Health, timelier and more reliable notification can be given for emerging infectious disease threats….We view the eCR program as a best-practice example of leveraging the power of electronic medical records and cross-agency interconnectivity, and urge HHS to devote additional resources in the near future towards its expansion and further implementation.”
