The reason so much attention in the US has been focused on building our national health data infrastructure is clear. The engine that will power our evolving learning health system is real-world data (RWD). Patient registries are essential fuel for this engine, supporting population health management, clinical decision making, quality improvement, and clinical research.

But the learning health system vision is not yet a reality. In order to achieve its broader goals, patient registries must be connected to other registries, electronic health records, and additional data sources. They must become part of a vast network of RWD characterized by interoperability—the capacity of a system to exchange electronic health information with and use electronic health information from other systems without special effort on the part of the user.

As the US healthcare system moves toward interoperability, registry stewards in multiple sectors—pharma, advocacy organizations and associations, and healthcare providers, to name the major players—can pave the way for the future within their own organizations by implementing strategies that bridge the gap between data collection and routine applications to improve care.

Avalere partners with healthcare leaders to demystify and simplify the process of transforming data into powerful patient registries that inform and help solve real-world health challenges.

Once an organization has determined a question, its registry can be built to bring the right audiences to the table to address it—most particularly patients themselves. Managing the information does not have to be an unwieldy process because the questions asked determine the participants involved. As familiarity with the registry grows—and as its effectiveness in supporting improved outcomes is born out—so does the comfort level with expanding the reach and scope of the registry. In this way, an organization becomes part of the overall paradigm shift toward solidifying a nationwide health learning system: the more a registry steward can continuously capture and apply RWD to establish real-world evidence, the more it enters into the ever-evolving, seamless world of patient registry interoperability.

Today and tomorrow, the nation focuses on using the vast amounts of electronic health data now available to build a learning health system and a national health data infrastructure. Avalere advocates for and supports integrated and inclusive patient registries as not merely a component of but a critical catalyst of a true learning health system, which is healthcare’s ultimate goal.

These patient registries will benefit from public or private sector activities that address barriers and make it easier to access existing sources of electronic health information and share information across health systems and providers. Active participation by registry stewards—professional societies, patient advocacy groups, and life science companies—in these national conversations is part of the solution, addressing their own concerns while helping to ensure the larger infrastructure gets built—and the sooner the better.

For a deeper dive into patient registries, check out Registries for Evaluating Patient Outcomes: A User’s Guide, which includes a chapter on “Health Information Technologies (IT) and Patient Registries,” co-authored by Avalere Senior Vice President Kristi Mitchell.

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