The key to a successful registry can be boiled down to a few fundamental principles: 1) collect the right data elements 2) store them in a reusable and interoperable fashion and 3) have the right partnerships to leverage the first two principles.

For medical specialty societies, the ability to support their provider members with reimbursement and quality measure activities requires medical specialty society registries to capture, store and exchange data using national data standards whenever possible. However, one of the most common anxieties that medical specialty societies experience is the lack of widely accepted data standards for the data elements important to their member community.

In today’s landscape, where data standards and requirements are jointly established for the provider community through the Centers of Medicare and Medicaid (CMS) and The Office of the National Coordinator for Health IT (ONC), Medical specialty societies need to understand the governmental requirements and processes involved in standard-setting to steer their organization to building and maintaining an optimal data registry.

Background and History

CMS Interoperability Rules establish a minimal set of data elements that must be collected by providers and hospitals for reimbursement. These requirements come from a combination of CMS’ Promoting Interoperability Program (Meaningful Use) that originated with the Health Information Technology for Economic and Clinical Health (HITECH) Act passed in 2009 through to CMS’ newest Interoperability Rule that stemmed from the 2016 21st Century Cures Act. The latest Cures Act regulations coming from CMS focus on payers making this collected data available to patients.

From the passage of HITECH and the implementation of the Promoting Interoperability Program, the federal government has aimed to shepherd providers and hospitals to collect, use, and exchange standards-based data elements whenever possible. Since Meaningful Use Stage 1 released in 2010, data standards have continued to evolve, broadening consensus and gaining adoption. As a recent step in this ongoing evolution, ONC, the federal agency responsible for regulations around certified health information technology, created the USCDI: a set of standardized data classes and elements the federal government can require through federal rule-making processes.

IQVIA’s white paper, Accelerating Interoperability with USCDI, introduces the United States Core Data Set (USCDI) to the medical specialty society community. The USCDI provides standards for data creation and formatting, defining the data classes and elements that EHRs must be able to share. Our white paper touches on how USCDI can help improve the provider’s processes and content of health delivery information they share with registries and CMS to measure healthcare quality. In addition, the improvement of data interoperability will increase access to data pipelines that medical specialty societies need to support their mission to generate state-of-the-art knowledge and best practices for their member communities.

Taking Advantage of USCDI

Broad adoption of USCDI creates many new opportunities for medical specialty societies. For example, if the data that your organization wants to collect or exchange is already included in the USCDI, many costs will diminish. However, the most important opportunity may be less obvious: if the data you are interested in collecting is not in the current version of the USCDI, you can engage in a process that will standardize at the element level and add it to future versions of USCDI.

Many medical specialty societies will continually identify the need for collecting data that are not yet reflected in the USCDI. Medical specialty societies are well positioned to spearhead efforts to bring their communities together and drive the development of data standards around important non-USCDI data elements. In fact, these types of efforts are encouraged by the ONC. The key is to be intentional in your forward path to sync with the USCDI process when appropriate (as laid out further in this piece). Without a downstream effort to merge your data elements with the USCDI, medical specialty societies will inadvertently create data silos that prevent the widespread collect, access and exchange of the information that is important to their communities. This lack of data interoperability in the long run will prevent the ability to efficiently reach practice goals and outcomes, lead to large losses in opportunity costs and burn through vast amounts of medical specialty society resources to overcome.

There are multiple stakeholders across the health ecosystem that want distinct data elements to support their activities and goals. The more interoperable the data is, the easier the organization can realize the value in that data point. For example, as valuable as social determinants of data—such as housing status—may be to the health outcome of a patient, not being able to share this information easily across healthcare partners prevents the collection and use of this data and any value it could provide. However, the recent efforts of the Gravity project under HL7, the standard organization responsible for many health data standards codified in federal regulations, had now standardized housing data through a consensus driven balloting process. These new SDOH data standards will be added to an upcoming version of the USCDI, allowing healthcare providers to more easily exchange this data to inform care decisions and improve health.¹

This process of making key data interoperable through consensus-driven standards development organizations (SDOs) and then adopted into the USCDI is important for medical specialty societies to understand. Medical specialty societies are tasked with representing the expertise of a specialty of providers and are in the best position to determine what data elements are crucial to improving care in their domain. Therefore, it is essential to have medical specialty society representatives equipped to navigate important cycles of the U.S. health data element standardization process so that they can advocate to the relevant SDOs and government agencies to include their data elements in the U.S. “interoperability machine.”

Conclusion

From initial concept to final publication in the USCDI, advocating for new data elements and classes to be organically collected and exchanged across certified health IT in the US can take around three years. This process can take much longer without the expertise or experience necessary to navigate each of the sub-steps. However, having data elements codified in the USCDI offers a long-term advantage to medical specialty societies much too big to be ignored. USCDI inclusion means the data elements are uniformly defined and ultimately universally required through U.S. Health IT Certification regulations. Inclusion creates the most effective and sustainable way to collect and use uniform, interoperable data across various players in the US health ecosystem in support of your important goals as a medical specialty society. In the long term, medical specialty societies will spend far more resources and see less value from non-interoperable data elements that live outside of the USCDI.

You might also be interested in this whitepaper: Accelerating Interoperability with USCDI

1. Gravity Project | HL7 International