In November 2019 the US Department of Health and Human Services (HHS) Office of Inspector General (OIG) released a new report, Top Management and Performance Challenges Facing HHS. Divided into six major sections, this report reviews the OIG’s observations with respect to financial integrity of HHS programs, value and quality, protecting the health and safety of beneficiaries as well as the public at large, harnessing data to achieve these goals, and working across government.
The fifth challenge, “Harnessing Data To Improve Health and Well-Being of Individuals,” is particularly foundational. The report identifies some key challenges that we have known to be true for many years: programmatic data silos within HHS that prevent data sharing, poor data use due to inadequate data governance, and the need to build advanced capacities leveraging such technologies as artificial intelligence (AI) and machine learning. The report recognizes the existence of legal, cultural, and resource limitations as additional barriers. These are, in fact, perhaps the most important factors.
The report goes on to recognize not only limitations in data sharing within HHS but the need to increase data sharing between HHS and external partners as well. Even when data is made available, access is limited for a number of reasons, including limited support for application programming interfaces (APIs) with external partners; limited uptake by eternal partners, be they patients or clinical organizations; limited use of interoperability with clinical care systems; and threats to cybersecurity and privacy of patient data.
For its part, Congress has been urged to pass a “$100 billion over 10 years” for the Centers for Disease Control and Prevention (CDC) to allow CDC, state, local, tribal, and territorial health departments to move from sluggish, manual, paper-based data collection to seamless, automated, interoperable IT systems and to recruit and retain skilled data scientists to use them (see previous blog). The House version of the current appropriation bill for HHS includes this funding; the Senate version currently does not, but does include some important language in its accompanying report that indicates some interest by the Appropriation subcommittee:
Public Health Data Systems.—The nation’s public health data systems are antiquated, rely on obsolete surveillance methods, and are in dire need of security upgrades. Lack of interoperability, reporting consistency, and data standards leads to errors in quality, timeliness, and communication. The Committee understands that CDC is developing plans for a public health data system modernization. The Committee directs CDC to develop a detailed plan that outlines specific agile development stages and associated funding requirements over the life of the project. Funding should be broken out by fiscal year. CDC is directed to consult with external experts such as the United States Digital Service or 18F on this plan. This plan shall be provided no later than 180 days after enactment to the Committees on Appropriations of the House of Representatives and the Senate.
And for its part, the CDC has initiated a project called MedMorph. According to a recent Federal procurement document, “The goal of this project is to leverage the FHIR, CCDS, USCDI, and other relevant existing health data and exchange standards to improve patient data exchange from different EHR platforms to various receiving systems in order to improve the timeliness and completeness of data received by public health and research and reduce the burden on health care providers and patients.” The ultimate goal is to improve availability of electronic health record (EHR) data for research and public health. This project has been bubbling within CDC for some time and was discussed openly at the HL7 Working Group Meeting (WGM) in September 2019. A project overview diagram was included within the recent Federal procurement document for services related to this project.
We still have a long way to go, but additional Congressional funding and a more holistic view of data sharing by CDC will certainly move us forward along the curve. Standards continue to play a key role in all of this as we still have a decentralized and fragmented healthcare ecosystem with many competing demands and priorities.
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