Next Steps to Support Real-World Testing
Aneesh Chopra (CareJourney), William Gregg (HCA Healthcare), Chesley Richards (CDC), & Don Rucker (ONC)
Public health is entering a new era. Federal regulators have set a baseline for what data will be readily available and what functionality will be supported nationwide. This is helping to unleash a vast amount of data that could be very valuable to public health. A new type of public-private partnership, based on a coalition of the willing, could help public health to architect modern data capabilities that are agnostic to the underlying systems where the data are stored.
Not Mapping to Nationwide Standards Could Result in Incompatible Systems, Decreasing Interoperability Rather Than Increasing IT
Across public health, there are multiple levels of information sharing from the state and local level. Public health data requests vary significantly in content and format. This results in duplication of effort and incomplete reporting. Standards help to ensure the sending and receiving systems speak the same language, promote seamless data exchange to local, state, regional, and federal public health data requestors while preserving the original meaning of the underlying data.
The realities of COVID have exposed an underlying need for very real-time information, or at least information that is as up to date as possible. During periods of public health response, there is often a need to scale up surveillance activities very quickly. It is easier to meet these demands if the data already flow more fluidly on an ongoing basis.
Additionally, public health stands to benefit from federal efforts around establishing trust mechanisms. The 21st Century Cures Act includes provisions for a Trusted Exchange Framework to enable widespread data exchange across organizational boundaries. The Trusted Exchange Framework includes a set of policies, procedures, and technical standards necessary to advance a single on- ramp to interoperability.
As ONC-required data standards begin to rollout nationwide and as the Trusted Exchange Framework is put into operation, public health can shift from a “reporting” mindset to the possibility of “harvesting” vast amounts of data that are broadly available. To take advantage of this opportunity, public health could architect applications in ways that are scalable and that plug into the infrastructure being created. A marketplace could emerge for open-source FHIR applications designed by one or more states to access USCDI data elements via ONC certified APIs without any sort of vendor control in the process. These applications could help handle routine processing of the data so that the public health workforce can focus on analytics that drive action instead of trying to build and maintain non-standardized IT tools.
Health Systems are Becoming More Well-Versed in FHIR and API-Based Ways of Exchanging Data
For several years, HCA Healthcare (a provider of healthcare services comprised of 185 hospitals and approximately 2,000 care sites) has been using FHIR internally to exchange data outside of its EHR. In this context, FHIR has proven to be scalable and more amenable to change than other standards and approaches. HCA is excited about the prospect of moving to bulk FHIR, and the organization supports a federated + cloud model for data exchange more broadly. This model is appealing to HCA because it offers local benefit and maintains local control while supporting multiple levels of information sharing.
Health Information Exchanges can Play an Important Role
Health information exchanges (HIEs) can provide an important complement to other methods of public health data acquisition. Under current public health reporting protocols, there is significant overlap. Multiple agencies request duplicate reports that result in significant processing expenses. HIEs already receive much of the same data and are in the business of normalizing, cleaning, and linking the data across multiple sources and removing duplicates. Also, since HIEs operate within states, they are well-versed in the state-specific privacy provisions and other state laws around health data.
HIEs are particularly well-positioned to assist state and local public health agencies in accessing identifiable, patient level-data, particularly social determinants of health and longitudinal data needed to evaluate health outcomes. Since HIEs capture vast amounts of operational data, they can provide mechanisms through which public health can explore answers to both simple and complex questions in privacy-preserving ways. This could be particularly helpful during situations like the current COVID-19 pandemic where public health needs to ask new questions of the data as time goes on, such as: How much time does it take between a COVID positive and a negative test, and then between a negative test a marker of serology? How useful is the serology marker? What’s the rate of reinfection? HIEs can help provide the computational environment and access to the data needed to answer these types of questions on an ongoing basis.
A Coalition of the Willing Could Help Public Health Jumpstart New Approaches to Interoperability
Recruiting and retaining people well-versed in these modern approaches to interoperability has been an ongoing challenge for public health. Public-private partnerships provide an opportunity to address longstanding data and interoperability challenges and to upskill the current public health workforce. “If we work with each other,” said Dr. Chesley Richards, “our combined competencies can truly transform public health data systems.”
In the spirit of collaboration, there are opportunities for a coalition of the willing to jumpstart the development of a federated data exchange model, supported by cloud-based technologies. This coalition of the willing could include committed visionaries from across public health, health information exchanges, technology companies, and experts in interoperability. An initial focus could be on how public health might leverage the bulk FHIR specification that will be implemented across the nation once certified health IT providers are in full compliance with the 21st Century Cures Act. Cloud IT providers have already started some of this work; having a dialogue about what’s possible could help ensure that public health needs are prioritized and accelerated.
A similar coalition of the willing formed around scalable, FHIR-based approaches for supporting consumer access to data. This coalition helped to get us to the point where we are now, where patients can access their health data on their iPhones and Android devices, where the VA and CMS make the health and payment data they collect available to patients and beneficiaries using the same standards, and where a robust market place has emerged to innovate at a pace that previously would have been unimaginable. We’re entering a new era where the vision shared in this listening session can soon become a reality for public health. There’s no time to waste.