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Suggested Citation:"Acronyms." Institute of Medicine. 2014. Contemporary Issues for Protecting Patients in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18823.
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Acronyms

AHRQ

Agency for Healthcare Research and Quality

ANPRM

Advanced Notice of Proposed Rulemaking

CLIA

Clinical Laboratory Improvement Amendments

CRT

cluster randomized trial

CSER

Clinical Sequencing Exploratory Research

EHR

electronic health record

eMERGE

Electronic Medical Records and Genomics

FIPP

Fair Information Practice Principle

HHS

U.S. Department of Health and Human Services

HIPAA

Health Insurance Portability and Accountability Act

HITECH

Health Information Technology for Economic and Clinical Health

IRB

institutional review board

IT

information technology

LHCS

learning health care system

Suggested Citation:"Acronyms." Institute of Medicine. 2014. Contemporary Issues for Protecting Patients in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18823.
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NCI

National Cancer Institute

NCI CIRB

National Cancer Institute Central Institutional Review Board

NIH

National Institutes of Health

OHRP

Office for Human Research Protections

PEER

Platform for Engaging Everyone Responsibly

PHI

Protected Health Information

SACHRP

Secretary’s Advisory Committee on Human Research Protections

TCGA

The Cancer Genome Atlas

Suggested Citation:"Acronyms." Institute of Medicine. 2014. Contemporary Issues for Protecting Patients in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18823.
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Page 67
Suggested Citation:"Acronyms." Institute of Medicine. 2014. Contemporary Issues for Protecting Patients in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18823.
×
Page 68
Next: Appendix: Workshop Statement of Task and Agenda »
Contemporary Issues for Protecting Patients in Cancer Research: Workshop Summary Get This Book
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In the nearly 40 years since implementation of federal regulations governing the protection of human participants in research, the number of clinical studies has grown exponentially. These studies have become more complex, with multisite trials now common, and there is increasing use of archived biospecimens and related data, including genomics data. In addition, growing emphasis on targeted cancer therapies requires greater collaboration and sharing of research data to ensure that rare patient subsets are adequately represented. Electronic records enable more extensive data collection and mining, but also raise concerns about the potential for inappropriate or unauthorized use of data, bringing patient protections into a new landscape. There are also long-standing concerns about the processes and forms used to obtain informed consent from patients participating in clinical studies. These changes and challenges raise new ethical and practical questions for the oversight of clinical studies, and for protecting patients and their health information in an efficient manner that does not compromise the progress of biomedical research.

Contemporary Issues for Protecting Patients in Cancer Research is the summary of a workshop convened by the National Cancer Policy Forum of the Institute of Medicine in February 2014 to explore contemporary issues in human subjects protections as they pertain to cancer research, with the goal of identifying potential relevant policy actions. Clinical researchers, government officials, members of Institutional Review Boards, and patient advocates met to discuss clinical cancer research and oversight. This report examines current regulatory provisions that may not adequately protect patients or may be hindering research, and discusses potential strategies and actions to address those challenges.

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