House passes bill funding HIT-enabled medical research

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The House of Representatives on Tuesday passed a Fiscal Year 2020 funding bill that includes $41.7 billion for the National Institutes of Health, including several critical health IT-enabled research initiatives.

The FY 2020 appropriation for NIH is an increase of $2.6 billion above the 2019 enacted level and $7.5 billion above the President’s budget request.

The bill supports several major NIH research initiatives that leverage HIT, including $500 million for the Brain Research through Application of Innovative Neurotechnologies (BRAIN) initiative, as well as $500 million for the All of Us research initiative—previously called the Precision Medicine Initiative.

The BRAIN Initiative is a large-scale NIH program to push the boundaries of
neuroscience research and equip scientists with insights from big data necessary for treating a wide variety of brain disorders, such as Alzheimer’s disease, autism, epilepsy and schizophrenia. Funding is being used to create a network of integrated centers, collaborating laboratories and data resources to make molecular, anatomical and functional data about brain cells available to the broader research community.

NIH’s All of Us research program is attempting to recruit more than one million Americans for the longitudinal study to contribute their physical, genomic and electronic health record data. In addition to providing blood and urine samples as well as access to EHRs, patients will provide their information to volunteers in the program through mobile technology, physical measurements and surveys. According to NIH, the goal is to create one of the largest and most diverse datasets of its kind for health research.

In addition, the bill passed by the House designates $195 million for the Cancer Moonshot initiative. The goal of the Cancer Moonshot initiative is to achieve a decade’s worth of progress against the disease in just five years. Data sharing is critical to the effort and will require HIT systems and software applications to communicate with one another and exchange data to derive actionable insights.

House appropriators also provided $50 million for the Childhood Cancer Data Initiative (CCDI), which is meant to collect, analyze and share data to address the burden of cancer in children, adolescents and young adults. CCDI aims to build a connected infrastructure to enable sharing of childhood cancer data from multiple sources; identify opportunities to make data work better for patients, clinicians and researchers; as well as develop and enhance tools and methods for extracting knowledge from data.

The Office of the National Coordinator for HIT also stands to benefit from the bill, which includes $60 million for the “development and advancement of interoperable health information technology.” In addition, legislative language was included directing ONC to submit a report to Congress within one year that evaluates the effectiveness of technical and operational methods that improve identification of patients.

Accurately matching EHRs to the correct patient is critical to medical care and safety by reducing preventable errors. However, medical records are often mismatched when data is transferred between healthcare systems.

“We are pleased that the appropriators have included report language that will continue to propel the conversation forward about patient identification,” said Wylecia Wiggs Harris, CEO of the American Health Information Management Association, in a written statement. “Patient identification is about enhancing data integrity and improving patient safety—this will continue to be a priority for AHIMA, and we look forward to working with our fellow stakeholders and federal partners to address this critical issue.”

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