scholarly journals Sync for Genes: Making Clinical Genomics Available for Precision Medicine at the Point-of-Care

2020 ◽  
Vol 11 (02) ◽  
pp. 295-302
Author(s):  
Stephanie J. Garcia ◽  
Teresa Zayas-Cabán ◽  
Robert R. Freimuth
Keyword(s):  
Information Technology ◽  
Precision Medicine ◽  
Health Information Technology ◽  
Health Information ◽  
Point Of Care ◽  
Genomic Data ◽  
Health Data ◽  
Lessons Learned ◽  
Data Standards ◽  
Research Initiative

Abstract Background Making genomic data available at the point-of-care and for research is critical for the success of the Precision Medicine Initiative (PMI), a research initiative which seeks to change health care by “tak(ing) into account individual differences in people's genes, environments, and lifestyles.” The Office of the National Coordinator for Health Information Technology (ONC) led Sync for Genes, a program to develop standards that make genomic data available when and where it matters most. This article discusses lessons learned from recent Sync for Genes activities. Objectives The goals of Sync for Genes were to (1) demonstrate exchange of genomic data using health data standards, (2) provide feedback for refinement of health data standards, and (3) synthesize project experiences to support the integration of genomic data at the point-of-care and for research. Methods Four organizations participated in a program to test the Health Level Seven International (HL7®) Fast Healthcare Interoperability Resources (FHIR®) standard, which supports sharing genomic data. ONC provided access to subject matter experts, resources, tools, and technical guidance to support testing activities. Three of the four organizations participated in HL7 FHIR Connectathons to test FHIR's ability to exchange genomic diagnostic reports. Results The organizations successfully demonstrated exchange of genomic diagnostic reports using FHIR. The feedback and artifacts that resulted from these activities were shared with HL7 and made publicly available. Four areas were identified as important considerations for similar projects: (1) FHIR proficiency, (2) developer support, (3) project scope, and (4) bridging health information technology and genomic expertise. Conclusion Precision medicine is a rapidly evolving field, and there is opportunity to continue maturing health data standards for the exchange of necessary genomic data, increasing the likelihood that the standard supports the needs of users.

scholarly journals Leveraging the health information technology infrastructure to advance federal research priorities

2020 ◽  
Vol 27 (4) ◽  
pp. 647-651 ◽  
Author(s):  
Teresa Zayas-Cabán ◽  
Amy P Abernethy ◽  
Patricia Flatley Brennan ◽  
Stephanie Devaney ◽  
Anthony R Kerlavage ◽  
...  
Keyword(s):  
Information Technology ◽  
Health Information Technology ◽  
Health Information ◽  
Health Research ◽  
Research Priorities ◽  
Health Data ◽  
Veterans Health ◽  
Health Administration ◽  
Health It ◽  
Using Data

Abstract Ensuring that federally funded health research keeps pace with the explosion of health data depends on better information technology (IT), access to high-quality electronic health data, and supportive policies. Because it prominently funds and conducts health research, the U.S. federal government needs health IT to rapidly evolve and has the ability to drive that evolution. The Office of the National Coordinator for Health Information Technology developed the National Health IT Priorities for Research: A Policy and Development Agenda (the Agenda) that identifies health IT priorities for research in consultation with relevant federal agencies. This article describes support for the Agenda from the Food and Drug Administration, the National Institutes of Health, and the Veterans Health Administration. Advancing the Agenda will benefit these agencies and support their missions as well as the entire ecosystem leveraging the health IT infrastructure or using data from health IT systems for research.

Health Data Security Considerations in Global Health Partnerships (Preprint)

2021 ◽  
Author(s):  
Juan Espinoza ◽  
Abu Sikder ◽  
James Dickhoner ◽  
Thomas Lee
Keyword(s):  
Information Technology ◽  
Global Health ◽  
Conceptual Framework ◽  
Health Information Technology ◽  
Health Information ◽  
Data Security ◽  
Quantitative Model ◽  
Health Data ◽  
Framework Analysis ◽  
Middle Income

BACKGROUND Healthcare databases contain a wealth of information that can be used to develop programs and mature healthcare systems. Of concern, the sensitive nature of health data (e.g. ethnicity, reproductive health, sexually transmitted infections, lifestyle information, etc.) can have significant impact on individuals if misused, particularly among vulnerable and marginalized populations. As academic institutions, NGOs, and international agencies begin to collaborate with low and middle-income countries (LMICs) to develop and deploy health information technology (HIT), it is important to understand the technical and practical security implications of these initiatives. OBJECTIVE Our aim was to develop a conceptual framework for risk stratifying global health data partnerships and HIT projects. In addition to identifying key conceptual domains, we mapped each domain to a variety of publicly available indices that could be used to inform a quantitative model. METHODS We conducted a non-systematic review of the literature to identify relevant publications, position statements, white papers, and reports. The research team reviewed all sources and used the Framework Method and Conceptual Framework Analysis to name and categorize key concepts, integrate them into domains, and synthesize them into an overarching conceptual framework. Once key domains were identified, public international data sources were searched for relevant structured indices to generate a quantitative counterpart. RESULTS We identified five key domains to inform our conceptual framework: 1) State of Health Information Technology, 2) Economics of Healthcare, 3) Demographics and Equity, 4) Societal Freedom and Safety, and 5) Partnership and Trust. Each of these domains was mapped to a number of structured indices. CONCLUSIONS There is a complex relationship between the legal, economic, and social domains of healthcare, which impacts the state of HIT in LMICs and associated data security risks. The strength of partnership and trust between collaborating organizations is an important moderating factor. Additional work is needed to formalize the assessment of partnerships and trust, and to develop a quantitative model of the conceptual framework that can help support organization decision-making.

Health Information Technology and Human Rights

2015 ◽  
pp. 1381-1392
Author(s):  
Shane O'Hanlon
Keyword(s):  
Information Technology ◽  
Human Rights ◽  
Electronic Health Records ◽  
Health Information Technology ◽  
Health Information ◽  
Health Data ◽  
Future Directions ◽  
The Right To Privacy ◽  
Legal Provisions ◽  
The Right

Information technology has the potential to transform healthcare and eradicate many of the inequities seen in the area. However, the use of electronic means to process sensitive health data poses significant risks. Electronic health records have been designed to be more secure than traditional paper records, but there have been notable cases where data has been lost, stolen, or viewed by unauthorised persons. Misuse of health information technology can result in severe violations of human rights. In particular, the right to privacy can be eroded by inappropriate protections, which still exist in some health systems. This chapter describes the rights framework in healthcare, analyses legal provisions for protection of health data, considers why such protections are necessary, outlines examples of rights violations, and proposes future directions.

scholarly journals Opportunities for the use of health information technology to support research

JAMIA Open ◽  
2020 ◽  
Vol 3 (3) ◽  
pp. 321-325
Author(s):  
Teresa Zayas-Cabán ◽  
Jonathan S Wald
Keyword(s):  
Information Technology ◽  
Health Services ◽  
Health Information Technology ◽  
Health Information ◽  
Biomedical Research ◽  
Data Access ◽  
The United States ◽  
Health Data ◽  
Health It ◽  
Electronic Health

Abstract In the last decade, expanding use of health information technology (IT) across the United States has created opportunities for use of electronic health data for health services and biomedical research, but efforts may be hampered by limited data access, data quality, and system functionality. We identify five opportunities to advance the use of health IT for health services and biomedical research, which informed a federal government-led, collaborative effort to develop a relevant policy and development agenda. In particular, the health IT infrastructure should more effectively support the use of electronic health data for research; provide adaptable technologies; incorporate relevant research-related functionality; support patient and caregiver engagement in research; and support effective integration of knowledge into practice. While not exhaustive, these represent important opportunities that the biomedical and health informatics communities can pursue to better leverage health IT and electronic health data for research.

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