• Link datasets to publications via PubMed Central and NCBI.
• Longer-term: Expand NIH Data Commons to allow submission, open sharing, and indexing of
individual, FAIR datasets.
Objective 2-3 | Leverage Ongoing Initiatives to Better Integrate Clinical and Observational Data
into Biomedical Data Science
NIH has several large-scale, ongoing efforts that are building high-value resources that include clinical
and observational data from individual volunteers and
patients (for one example, see text box, “TB Portals”). These
efforts also include the All of Us Research Program and
Cancer Moonshot
SM
, the National Heart, Lung and Blood
Institute’s Trans-Omics for Precision Medicine (TOPMed)
program, the Environmental Influences on Child Health
Outcomes (ECHO) program, and various datasets generated
by scientists conducting research in the NIH Clinical Center
(see text box, below, “Big Data for Health”). Other federal
datasets are likely to be invaluable for research discovery,
such as the Million Veteran Program and other data from the
Veteran’s Health Administration, the nation’s largest
integrated health system. NIH will leverage these and other related initiatives to integrate the patient
health data they contain into the biomedical data-science ecosystem in ways that maintain security and
confidentiality and are consistent
with informed consent, applicable
laws, and high standards for ethical
conduct of research (see
Clinical
Data and Information Security).
NIH will collaborate with the Office
of the National Coordinator for
Health Information Technology
(ONC), within the Department of
Health and Human Services, which
leads national health information
technology efforts (see text box,
below).
The NIH Clinical Center has in place
the Biomedical Translational
Research Information System
(BTRIS), which is a resource
Big Data for Health
Two signature NIH projects that aim to garner health insights from
human data are the All of Us Research Program and the Cancer
Moonshot. The All of Us Research Program aims to gather data over
time from 1 million or more people living in the United States, with
the ultimate goal of accelerating research and improving health.
Scientists plan to use All of Us Research Program data to learn more
about how individual differences in lifestyle, environment, and
biological makeup can influence health and disease. Participants in
the All of Us Research Program may be invited to use wearable
sensors that will provide real-time measurements of their health and
environmental exposures, significantly expanding this type of
research. The Cancer Moonshot aims to accelerate cancer research
to make more therapies available to more patients, while also
improving our ability to prevent cancer and detect it at an early
stage. Data-intensive strategies include mining past patient data to
predict responses to standard treatments and future patient
outcomes, developing a three-dimensional cancer atlas to view how
human tumors change over time, and a Cancer Research Data
Commons.
TB Portals
The National Institute of Allergy and Infectious
Diseases Tuberculosis (TB) Portals Program is a
multi-national collaboration for data sharing and
analysis to advance TB research. A consortium of
clinicians and scientists from countries with a heavy
burden of TB, especially drug-resistant TB, work
together with data scientists and information
technology professionals to collect multi-domain TB
data and make it available to clinical and research
communities.