The Fight to Control COVID-19 Demands Data

For COVID-19 resources for health IT developers and other stakeholders, click here.

COVID-19 arrived unexpectedly as a highly contagious disease that surprised everyone, requiring healthcare providers and public health officials to take quick action and make decisions on how to care for those infected, how to slow down (if not prevent) the spread, how to improve treatment options, and how to identify a vaccine. Yet this pandemic continues to take too many lives and affect too many more.  

To understand how to treat the patients, which risk factors make some people more vulnerable, and why it spread so fast, access to data has been proven essential. A patient’s clinical record to facilitate treating those who are ill, combined with further socio-demographic data to research and identify those at highest risk and new data to support clinical trials – all are essential to flatten and ultimately bend the curve as far down as possible. 

Providers, public health officials, and EHR and other health IT developers all worked quickly to expand the necessary IT infrastructure to support new and still-emerging requirements. They collected new data, enabled analytics, extended EHRs to support field hospitals, and shared more data where needed.

The EHR Association’s annual Congressional Briefing (presentation, recording) shared the developer community’s response to the pandemic and featured the perspective of Northwell Health in New York, which was among the first in the country to face a surge of ill patients. From their perspective, data from the EHR was “absolutely critical.” Moreover, EHR connections to regional HIEs and national networks such as Carequality and Commonwell have been invaluable in supporting emergency surge sites, enabling access to full patient records to support safer care. Panelists also shared learnings to date about the gaps in information, the challenges with reporting, and the suitability of the available data for rapid, nationwide analytics.

Nonetheless, our collective efforts across providers, public health jurisdictions, and health IT suppliers have not filled all the gaps; more needs to be done to gain the necessary insight at a local, state, and national level.

In this blog post, we highlight key areas of focus that we, the healthcare community, need to address to improve how the U.S. is responding to the evolving COVID-19 pandemic, as well as how we can be better prepared for future health crises. 

Public Health Data Requests

As coronavirus continues to take lives and livelihoods, public health agencies, epidemiologists, and researchers have been anxious to gather data in the struggle to get ahead of the virus. They want clear, location-specific, real-time answers to questions such as:

  • How many tests have been done? How many are positive? How many are negative? How many are pending? What are the demographics of those being tested? What differing results are we seeing between different demographic groups?
  • How many people with the COVID-19 virus are being admitted to hospitals? What are the demographics of those being admitted? What are their comorbidities? What are their vital signs? How many are in the ICU? How many are on ventilators? 
  • Which patient characteristics impact disease progression and outcomes? Which comorbidities contribute to severity?  Which treatments show effectiveness or promise?
  • What are hospitals’ ICU and overall capacity? What is bed availability in each region? What is ventilator availability? How much PPE is available?

Many of the answers to these and other questions can be found in hospitals’ EHR systems, and the EHR Association’s COVID-19 Task Force has been working with public health officials to clarify their data needs and identify the most efficient ways for hospitals to report that data. It is essential that we have a collective and consistent approach across the healthcare system, to enable meaningful and accurate analytics.

Unfortunately, we continue to hear from our customers – hospitals and clinicians who use EHRs – that they’re getting requests for the same data from multiple government agencies. For example, one public health authority wanted a daily spreadsheet of COVID-19 tests completed. Another wants the same data, but reported in a different format. Still another wants testing data – both current and cumulative – provided weekly, by email to an individual staffer. Requirements change weekly (and in some cases daily), with little to no notice.  This is an unnecessary burden on our clients, and the resulting delays are negatively impacting the public health and epidemiological communities’ ability to determine and disseminate best practices or to flag hotspots as quickly as possible.

EHRA and our member companies continue to work directly with the Department of Health & Human Services (HHS), the Centers for Disease Control & Prevention (CDC), the Office of the National Coordinator for Health IT (ONC) and other federal public health agencies, as well as with local and state public health authorities, on efforts to synchronize these requests and establish reporting standards in order to ease that burden on hospitals. 

Electronic Case Reporting – eCR Now

Electronic case reporting, or eCR, involves “the automated identification of reportable health events in electronic health records and their transmission to state and local public health authorities for review and action.” eCR makes it possible for EHR implementers to enable healthcare providers to meet their legal reporting obligations by automating reporting. 

When COVID-19 was first identified, eCR was just beginning operationalization by the CDC, the Council of State and Territorial Epidemiologists (CSTE), and the Association of Public Health Laboratories (APHL) with early pilots and deployments. The eCR team developed a strategy, eCR Now, for immediate and rapid deployment, including an open source FHIR® SMART App constructed to interact with EHRs to determine when eCR is needed. Further, it can also collect the data, as well as progressing work in flight connecting to existing infrastructure to support appropriate reporting. 

EHR Association members are working with CDC and APHL to roll out electronic case reporting as quickly as possible, with the goals of providing a stronger set of data to support decision-makers.

HL7 SANER Project FHIR Implementation Guide

The HL7® Situation Awareness for Novel Epidemic Response (SANER) Project is creating an inventory of all known COVID-19 metrics requested by national, state, and local public health authorities, supporting collective knowledge sharing while preparing a FHIR-based implementation guide to enable FHIR-based reporting solutions whether through FHIR-formatted file transfers or FHIR-based APIs. This is a forward-looking approach to start building a more robust and dynamic reporting mechanism that enables a wider range of capabilities to be more rapidly available for the next wave or pandemic.

We urge all stakeholders to contribute to this effort. An accurate and complete inventory of standardly-defined metrics will allow developers to implement consistent support across EHRs and data collection initiatives, reducing duplicative and contradictory data collection, while enabling novel analytics to more easily tap into a consistent data flow.

Health Information Exchanges

Because of the increased emphasis on data sharing during the coronavirus pandemic, national private sector exchange collaboratives such as Carequality, the CommonWell Health Alliance, the eHealth Exchange, DirectTrust, SHIEC, and regional HIEs have been instrumental to enable access to critical patient data. Additionally, they have established a framework to more quickly roll out electronic case reporting while providing an alternate path to access patient data to support Public Health authorities.

The Future of Public Health Data Collection

The pandemic has exposed a critical need for a robust, flexible, open public health data infrastructure across local, state and federal agencies – with clear, centralized ownership within HHS. This would include establishing an upgraded national reporting infrastructure; a surge process infrastructure; and clear privacy, consent, and retention requirements. Encouraging participation in national health information exchange networks would be an effective first step.

COVID-19 has underscored the importance of electronic health data that is comprehensive and readily available, as well as the challenges of providing the right information to the right people at the right time. EHR developers – both individually and collectively through the EHR Association – are focused on expanding the ability to gather and share the new data needs that have been identified as we learn collectively what it takes to understand and contain this highly contagious virus. Learn more here.  

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    Kristi Feliksik
    kfeliksik @ ehra.org

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