Modernization: Related People and Activities

Modernizing the National Vital Statistics System means working in collaboration with people and projects both internal and external to NCHS. Below are some of the people and activities that touch our work through a combination of funding, partnerships, and shared values and missions.  

Related Activities and Projects

The Patient-Centered Outcomes Research Trust Fund (PCORTF) maintains a full list of its funded projects, including other current projects with NCHS and completed vital statistics/mortality data projects.

CDC’s Data Modernization Initiative (DMI) marks the first comprehensive, cross-cutting effort to improve data at CDC by modernizing tools, technology, strategy, and the agency’s culture around data – all at the same time. This initiative supports public health surveillance, research and, ultimately, decision-making.

Related CDC Data Modernization Projects:

• Improving Public Health Surveillance and Data at CDC
• Modernizing Notifiable Diseases—How Counting Cases Prompts Action
• Bridging Public Health and Health Care – Better Exchange, Better Data
• Modernizing Death Reporting
• Connecting Real Time Data – When Symptoms Send a Signal
• Revolutionizing Public Health Data Systems – How Sharing Advances Surveillance
• Moving Lab Reporting at the Speed of Light
• When Informatics Promotes Innovation

Disaster-related deaths: CDC’s Center for Preparedness and Response (CPR), CDC’s National Center for Environmental Health (NCEH), and the National Academy of Sciences are leading a variety of projects to improve disaster-related death registry processes and increase death count accuracy after disasters.

• To learn more about collaborative work with NCHS, see our Projects and Initiatives
• Connect with the National Academies for resources related to their ongoing two-year study on counting deaths after disasters.
• Visit the NCEH website for the complete list of CDC’s disaster-related tools and materials
• Read the GAO Report: Disaster Response: Federal Assistance and Selected States and Territory Efforts to Identify Deaths from 2017 Hurricanes
• New York Times article: Tallying the Dead: Why a Storm Death in One State Might Not Count in Another

The Argonaut Project was a cross-industry group of hospital systems, insurance companies, and other private sector entities that came together as an implementer’s workgroup to advance the development and adoption of FHIR (Note: Apple, Google, and hundreds of partners have all agreed to implement the Argonaut profiles.)

The Substitutable Medical Applications and Reusable Technologies (SMART) project provides the security infrastructure and technical underpinnings to build applications on top of FHIR-enabled Electronic Health Records and other data systems that support FHIR.

• View the app gallery

Observational Health Data Science and Informatics (OHDSI, pronounced “Odyssey”) is a multi-stakeholder, interdisciplinary collaborative to bring out the value of health data through large-scale analytics. All solutions are open source. OHDSI has established an international network of researchers and observational health databases, with a central coordinating center housed at Columbia University.

• Video: Dr. Jon Duke gives an example of how OHDSI works at the 2017 OHDSI Symposium
• Videos about OHDSI and how they help researchers answer questions by querying data and running analyses across multiple sites

The Opioid Resource Center, maintained by the American Society of Crime Laboratory Directors (ASCLD) helps laboratories deal with the opioid crisis and includes a full listing of newly identified Novel Psychoactive Substances found in seized drugs – information that jurisdictions may see on death certificates.

Funding partners

Patient-Centered Outcomes Research Trust Fund (PCORTF): The Assistant Secretary for Planning and Evaluation (ASPE) coordinates a portfolio of intradepartmental projects that build data capacity for conducting patient-centered outcomes research (PCOR). PCOR funding “provides for the coordination of relevant Federal health programs to build data capacity for comparative clinical effectiveness research, in order to develop and maintain a comprehensive, interoperable data network to collect, link, and analyze data on outcomes and effectiveness from multiple sources including electronic health records.”

CDC’s Opioid Response Coordinating Unit (ORCU): Housed in CDC’s National Center for Injury Prevention and Control, ORCU is leading CDC’s response to the opioid epidemic. CDC’s funding for opioid-related activities has increased from $0 in FY 2014 to an appropriation of $475 million for opioid overdose prevention and surveillance activities in FY 2019. The majority of these funds go to the states for their prevention efforts.

Technology Organizations and Partners

The Office of the National Coordinator for Health Information Technology (ONC): ONC is the principal federal entity charged with coordination of nationwide efforts to implement and use the most advanced health information technology and the electronic exchange of health information. The position of National Coordinator was created in 2004, through an Executive Order, and legislatively mandated in the Health Information Technology for Economic and Clinical Health Act (HITECH Act) of 2009.

Integrating the Healthcare Enterprise (IHE): IHE promotes the adoption and use of world-class standards, tools, and services for interoperability. IHE engages all levels of public and private sector participants to test, implement, and use standards-based solutions for health information, including by hosting Connectathon events that bring developers together to fine-tune product interoperability and “complete months of development in minutes.”

Health Level Seven International (HL7): Founded in 1987, HL7  is a not-for-profit, ANSI-accredited organization dedicated to providing a comprehensive framework and related standards for the exchange, integration, sharing, and retrieval of electronic health information. HL7 developed the FHIR (Fast Healthcare Interoperability Resources) standard for exchanging healthcare information electronically. HL7 FHIR® Connectathons are a two-day events for hands-on FHIR development and testing.

Georgia Tech Research Institute (GTRI): GTRI is the nonprofit, applied research division of the Georgia Institute of Technology (Georgia Tech). Founded in 1934, GTRI has grown to more than 2,000 employees supporting eight laboratories in over 20 locations around the country and performs problem-solving research for government and industry.

MITRE: As a not-for-profit organization, MITRE works in the public interest across federal, state and local governments, as well as industry and academia. MITRE assists the United States government with scientific research and analysis; development and acquisition; and systems engineering and integration.

JASON is an independent group of scientists that advises the federal government on matters of science and technology. They were convened by MITRE and prepared a report for the Agency for Healthcare Research and Quality in 2014 to explore ways to improve care and lower costs by promoting interoperability across electronic health record systems.