NIH is currently accepting public comments on the use of standards for capturing, integrating, and exchanging clinical data for research purposes (NOT-OD-19-150). This is a great opportunity to hear more from the community on ways to strengthen approaches that find, share, and access high-quality patient data, while also making it more interoperable and reusable. Such goals align with long-standing NIH data sharing policies and what was also called for in a related NIH strategic plan on data science.
The Request for Information focuses on the Fast Healthcare Interoperability Resources (FHIR®) standard (see also NOT-OD-19-122). Widely promoted and adopted for use in clinical care, FHIR is a standardized way to transmit structured clinical data between health information systems, while also protecting patient privacy and security, via an application programming interface.
The 21st Century Cures Act also called for such computational strategies to enhance the interoperability of electronic health records. The U.S. Department of Health and Human Services is coordinating this process and has called for the health care industry to adopt such strategies by using the FHIR standard to share patient data. Moreover, federal agencies and the private sector have used FHIR in various ways, from exchanging claims data, allowing individuals to import health records from providers, and integrating clinical trial management.
When putting the FHIR standard into practice, NIH can better ensure taxpayer resources are efficiently used to maximize their public value. For example, it could quicken the pace and lower costs for collecting, integrating, and using patient data available on trusted electronic health records for medical research. It is conceivable that when clinical, genomic, demographic, billing, claims, and socioeconomic information is easily accessible and interoperable, novel biomedical and behavioral research ideas could be tested, possibly leading to advances in science and public health. As a start towards this, we began soliciting ideas from the small business community to implement this standard in health information technology (NOT-OD-19-127).
Your thoughts on how NIH-funded researchers could adopt FHIR are welcomed electronically here through November 23, 2019. General topics of interest include researcher experiences with FHIR, one’s willingness to use it, any necessary tools, the need for research related to standards development, opportunities, and challenges.