7th Annual AMIA Invitational Health Policy Meeting December 12-13 ...

Agency or
Organization
National Committee on
Vital and Health Statistics
(NCVHS)
National Science
Foundation (NSF)
National Institutes of
Health (NIH)
AMIA Invitational Health Policy Meeting 2012
Page 47 12/10/2012
Data Use Programs and Policies (selected)
� Submitted a 2011 report to DHHS: The Community as a Learning System: Using Local Data to Improve Local Health. Discusses the need
to build trust to support data use through technological mechanisms, data stewardship, community education and engagement,
transparency, and governance. See http://www.ncvhs.hhs.gov/111213chip.pdf
� Submitted a 2007 report: Report to the Secretary of the U.S. Department of Health and Human Services on Enhanced Protections for
Uses of Health Data: A Stewardship Framework for “Secondary Uses” of Electronically Collected and Transmitted Health Data. See
http://ncvhs.hhs.gov/071221lt.pdf
� NSF Data Sharing Policy: Investigators are expected to share with other researchers, at no more than incremental cost and within a
reasonable time, the primary data, samples, physical collections and other supporting materials created or gathered in the course of
work under NSF grants. Grantees are expected to encourage and facilitate such sharing. See Award & Administration Guide (AAG)
Chapter VI.D.4. http://www.nsf.gov/bfa/dias/policy/dmp.jsp
� NIH Biomedical Translational Research Information System (BTRIS) is a search facility providing intramural researchers with access to
clinical research data from many sources over 36 years. It maximizes use of clinical research data to support hypothesis generation and
testing. See http://btris.nih.gov/
� Clinical Translational and Science Awards (CTSA) program is comprised of about 60 academic medical institutions and a coordinating
center working together to accelerate the translation of laboratory discoveries into treatments for patients, to engage communities in
clinical research efforts, and to train clinical and translational researchers. Examples of activities relevant to data sharing include
cataloging of detailed information on EHR data availability among consortium members; maintenance of 28 biobanks in which biological
samples are linked to clinical data derived from a continuously updated electronic system (e.g. an EHR); and use of cTAKES (Clinical Text
Analytics and Knowledge Extraction System), an open source, natural language processing system for information extraction from EHR
free text. See https://www.ctsacentral.org/
� Nearly 100 NIH intramural investigators have accessed the Database of Genotypes and Phenotypes (dbGaP) (a central repository of
genome-wide association studies data) to conduct secondary studies on genetic risk factors associated with the major mood disorders,
schizophrenia, asthma, and autism; insights into a key metabolic pathway and neurodegenerative diseases; and improved statistical
methods to study X-linked diseases such as age-related macular degeneration. See http://irp.nih.gov/catalyst/v20i3/news-you-can-use
� NIH Data Sharing Policy: http://grants.nih.gov/grants/policy/data_sharing/
� Confidentiality, Data Security, and Cancer Research: Perspectives from the National Cancer Institute. March 23, 1999.
http://www3.cancer.gov/confidentiality.html
� Other data sharing documents:
http://grants.nih.gov/grants/policy/data_sharing/data_sharing_resource
s.htm