Research Guides: Health Care Informatics: Websites of Interest

Healthcare Datasets

Healthdata.gov
H*CUP
Big Cities Health Data
DASH NIH
Global Health Data Exchange
more...less...
Created and maintained by University of Washington's Institute for Health Metrics and Evaluation
Health Equity Tracker - Data
Health Measures Dataverse
more...less...
Researchers can also download data obtained from instrument development and testing at HealthMeasures Dataverse.

Researchers may also upload their own datasets, as part of their data sharing plan.
California Health and Human Services Open Data Portal
Datasets from California Department of Healthcare Access and Information
Produces over 150 datasets and products taken from reports submitted to HCAI by approximately 8,000 individual, licensed healthcare facilities including hospitals, long-term care facilities, primary care clinics, specialty clinics, hospices, and home health agencies.

Interoperability

Interoperability - The Office of the National Coordination of Health IT The collaborative efforts of stakeholders are crucial to achieving three goals: 1) the vision of a learning health system where individuals are at the center of their care and providers have a seamless ability to securely access and use health information from different sources. 2) to provide access to individuals health information, which is stored in electronic health records (EHRs), but includes information from many different sources and portrays a longitudinal picture of their health. 3) helping public health agencies and researchers rapidly learn, develop, and deliver cutting edge treatments.
Standards Collaboration The work promoting the adoption and uptake of health information technology is key to ensuring the goals of the Health Information Technology for Economic and Clinical Health Act of 2009 (HITECH), the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), and the 21st Century Cures Act of 2016.
Interoperability Roadmap The Roadmap, shaped by stakeholder input and public comments, supports the vision that ONC outlined. The calls to action and commitments from the Roadmap were crafted by experts and people on the ground who understand the complex health IT ecosystem and sensitive nature of health and care. Explore the calls to actions and commitments organized by participant group as well as the statements of support from industry groups and organizations.
Patient Consent for Interoperability Learn more about the considerations providers, patients, and policy researchers/implementers should take into account related to consent policies for patients
Interoperability Standards Advisory The Interoperability Standards Advisory (ISA) process represents the model by which the Office of the National Coordinator for Health Information Technology (ONC) will coordinate the identification, assessment, and determination of "recognized" interoperability standards and implementation specifications for industry use to fulfill specific clinical health IT interoperability needs.

Health Data Standards Sites

World Wide Web Consortium (W3C) The World Wide Web Consortium (W3C) is an international community that develops open standards to ensure the long-term growth of the Web.
Unified Medical Language System (UMLS) The UMLS integrates and distributes key terminology, classification and coding standards, and associated resources to promote creation of more effective and interoperable biomedical information systems and services, including electronic health records.
Sequoia Project The Sequoia Project is the independent, trusted advocate for nationwide health information exchange. In the public interest we steward current programs, incubate new initiatives and educate our community.
Strategic Health Information Exchange Collaborative The Strategic Health Information Exchange Collaborative (SHIEC) is the national collaborative representing health information exchanges (HIEs), associated organizations, and strategic business and technology partners
more...less...
SHIEC strives to enable the secure exchange of patient information to improve the quality, coordination, and cost-effectiveness of healthcare locally, regionally and nationally. We are the largest consortium of its kind in the country, representing 76 HIEs that together cover more than 92% of the United States population, and 125+ total organizations.
RxNorm RxNorm provides normalized names for clinical drugs and links its names to many of the drug vocabularies commonly used in pharmacy management and drug interaction software, including those of First Databank, Micromedex, and Gold Standard Drug Database. By providing links between these vocabularies, RxNorm can mediate messages between systems not using the same software and vocabulary.
Object Management Group - Standards Development Organization The mission of the Object Management Group (OMG) is to develop technology standards that provide real-world value for thousands of vertical industries. OMG is dedicated to bringing together its international membership of end-users, vendors, government agencies, universities and research institutions to develop and revise these standards as technologies change throughout the years.
National Uniform Claim Committee
National Library of Medicine
National Electrical Manufacturers Association
National Council for Prescription Drug Programs
LOINC - Logical Observation Identifiers Names and Codes The international standard for identifying health measurements, observations, and documents. Reference labs, healthcare providers, government agencies, insurance companies, software and device manufacturers, researchers, and consumers from around the globe use LOINC to identify data and move it seamlessly between systems.
International Statistical Classification of Diseases & Related Health Problems
International Organization for Standardization (ISO) We're ISO, the International Organization for Standardization. We develop and publish International Standards.

DataSet Resources - links are exposed for you to see origin

Amazon Web Services (AWS) datasets: https://registry.opendata.aws/

Awesome Public Datasets: https://github.com/awesomedata/awesome-public-datasets

BigQuery Public Datasets: https://cloud.google.com/bigquery/public-data/

Bureau of Labor Statistics: https://www.bls.gov/data/

Eurostat: open data from the EU statistical office: https://ec.europa.eu/eurostat/data/database

Google Dataset Search: https://datasetsearch.research.google.com/

Harvard Dataverse: https://dataverse.harvard.edu/

Kaggle Datasets: https://www.kaggle.com/datasets

Large Health Data Sets: https://www.ehdp.com/links/datasets.htm

UC Irvine Machine Learning Repository: http://archive.ics.uci.edu/ml/index.php

U.S. Government open data: https://www.data.gov/

World Bank Open Data: https://data.worldbank.org/

YouTube-8M Segments Dataset: https://research.google.com/youtube8m/

Office of the National Coordinator for Health Information Technology (ONC)

Certification of Health IT The ONC Health IT Certification Program provides assurance to purchasers and other users that a system meets the technological capability, functionality, and security requirements adopted by Health and Human Services.
Clinical Quality and Safety Delivering optimal care is an ongoing process. It builds on the foundation of evidence-based care and moves through a continuous cycle of 1) Measuring Results 2) Prioritizing Improvements 3) Implementing and Monitoring Results
Health IT and Health Information Exchange Basics
HealthIT Resources
Health IT in Health Care Settings The Office of the National Coordinator for Health IT (ONC) supports a broad range of health IT initiatives to drive broader understanding of the role health IT can play in supporting care outcomes.
HITAC - Health Information Technology Advisory Committee The Health Information Technology Advisory Committee (HITAC) was established by the 21st Century Cures Act (P.L. 114-255) and is governed by the provisions of the Federal Advisory Committee Act (FACA), P.L. 92-463, as amended, 5 U.S.C. App. 2, which sets forth standards for the formation and use of federal advisory committees. The HITAC will recommend to the National Coordinator for Health Information Technology policies, standards, implementation specifications, and certification criteria relating to the implementation of a health information technology infrastructure, nationally and locally, that advances the electronic access, exchange, and use of health information. HITAC unifies the roles of, and replaces, the Health Information Technology Policy Committee and the Health Information Technology Standards Committee that were in existence before the date of the enactment of the 21st Century Cures Act.
Global Health IT Efforts As digital health innovation and advancement occur globally every day, it is vital that ONC represents US health IT efforts and equities in fast-moving global digital health discussions to ensure our domestic efforts align with worldwide efforts and vice versa. With this rapid pace of advancement, it is essential for ONC to collaborate with our global counterparts to have substantive discussions to advance key elements of digital health so nations can use those best practices at-home and also collaboratively with other nations to yield better patient outcomes, reduce administrative burden on providers, empower patients to access their health data, and more. ONC engages with global health IT stakeholders in a plethora of ways, including through bi-lateral and multi-lateral meetings and events, summits, multi-national organizations, collaboration with country governments, and the Global Digital Health Partnership.
Information Blocking What is information blocking? In general, information blocking is a practice by a health IT developer of certified health IT, health information network, health information exchange, or health care provider that, except as required by law or specified by the Secretary of Health and Human Services (HHS) as a reasonable and necessary activity, is likely to interfere with access, exchange, or use of electronic health information (EHI).
Laws Regulation and Policy The HITECH Act established ONC in law and provides the U.S. Department of Health and Human Services with the authority to establish programs to improve health care quality, safety, and efficiency through the promotion of health IT, including electronic health records (EHRs) and private and secure electronic health information exchange. ONC is now implementing several provisions of the bipartisan 21st Century Cures Act, signed into law in December 2016.
Standards and Technology The Office of the National Coordinator (ONC) promotes the adoption and use of standards and technologies that allow health information to be shared electronically between clinicians, patients, researchers, and others with the authorization to the access the information. By promoting this ability to share information, often referred to as “interoperability,” ONC aims to promote better care for patients, encourage stronger patient engagement in their own care, and lay the foundation for important new health initiatives, including the Precision Medicine Initiative.
Scientific Initiatives The Office of the National Coordinator for Health Information Technology (ONC) conducts projects that leverage the existing health IT investment to support the biomedical and health services research enterprise. In addition, ONC coordinates related health IT policy and programs with key federal and private sector stakeholders such as the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Key relevant programs and projects are highlighted.

Websites of Interest

Health Data Standards
From the National Library of Medicine

Agency for Healthcare Research

AHRQ Research
Historical Guidelines and Measures (through 2018)
Guidelines and Measures Updates
more...less...
AHRQ’s study follows the July 16, 2018, closure of the NGC. The NGC was originally created in 1998 by AHRQ in partnership with the American Medical Association and the American Association of Health Plans (now America's Health Insurance Plans). This partnership ended in 2002. The contract that supported the NGC ended August, and funds to continue support for the NGC were unavailable.
For more information, please contact Mary Nix, Mary.Nix@ahrq.hhs.gov.
Evidence-based Reports from AHRQ

Articles not published in academic journals

"Preprints are complete and public drafts of scientific documents, not yet certified by peer review. These documents ensure that the findings of the research community are widely disseminated, priorities of discoveries are established and they invite feedback and discussion to help improve the work.

Certification by peer review is the key distinction between a preprint and an accepted author manuscript or published article. Many preprints are submitted to journals for publication, and as a result, subsequent versions of the paper may also be made available after peer review. Readers of preprints should be aware that any aspect of the research, including the results and conclusions, may change as a result of peer review (see PMC Disclaimer). Authors may also revise preprints and post updated versions to the preprint server." (NIH 2024, "Preprint Pilot")

To view more about preprints available through PubMed, see NIH Preprint Pilot.

ASAPbio
medRxiv
more...less...
medRxiv was founded by Cold Spring Harbor Laboratory (CSHL), a not-for-profit research and educational institution, Yale University, and BMJ, a global healthcare knowledge provider. The server is owned and operated by CSHL. medRxiv provides a platform for researchers to share, comment, and receive feedback on their work prior to journal publication.
OSF Preprints
more...less...
OSF Institutions enhances transparency and increases the visibility of research outputs, accelerating discovery and reuse. Institutional members focus on generating and sharing research, and let OSF Institutions handle the infrastructure.
SSRN - Social Science Research Network
NIH Preprints Pilot
F1000 Research