ACT

Accrual [of Patients] to Clinical Trials; NCATS-funded consortium of CTSA hubs that incorporates SHRINE instances across the USA

AMIA

American Medical Informatics Association (amia.org)

CDM

Common Data Model; see i2b2/tranSMART CDM and OMOP CDM

CRI

Clinical Research Informatics

CTSA

Clinical and Translational Science Award from the NIH

de-identified data

over 18 different types of personal data must be removed from patient records to qualify as “de-identified” data; not generally useful for research; NOT the same as "limited-data-set data"

DHHS

Department of Health and Human Services (Federal); also HHS

EHR

Electronic Health Records (also EMR)

EMR

Electronic Medical Records (also EHR)

ETL

extract, transform, load (database conversion); the primary ETL for i2b2 is in the conversion of EHR/EMR to the CRC database (CDM)

FHIR

Fast Healthcare Interoperability Resources, interoperability standard from HL7 (say “fire”)

GIS

Geographic Information Services

HIPAA

Health Insurance Portability and Accountability Act, 1996, allows people to transfer their health insurance from one employer to another; includes privacy and security standards (say "hipp-uh")

HHS

US Dept. of Health and Human Services

HL7

Health Level Seven International, an ANSI-accredited standards-developing non-profit organization, since 1987 (www.hl7.org); author of FHIR

i2b2

Informatics for Integrating Biology and the Bedside (i2b2.org)

IRB

Institutional Review Board (required anytime human subjects are part of the research)

LDS

see limited data set

limited data set

PHI which excludes direct identifiers of the patient, their family, employer, etc.  May include city, state, ZIP code, general geographic info, DOB, DOD, age in years, months, days, or hours.  Still protected under HIPAA.  This is NOT de-identified.  It may NOT include name, address, phone, email, SSN, MRN, insurance ID, account #’s, license #’s, vehicle IDs, device IDs, URLs, IP addresses, biometric IDs, photos, etc.

NCATS

National Center for Advancing Translational Sciences, part of the NIH

NCBC

National Center for Biomedical Computing

NIH

National Institutes of Health, under DHHS

NPO

non-profit organization

OCR

HHS Office for Civil Rights, investigates HIPAA violations

OHDSI

Observational Health Data Science and Informatics (ohdsi.org) (say “odyssey”), successor to OMOP (est. 2014)

OMOP

Observational Medical Outcomes Partnership (2009–2014) (omop.org), succeeded by OHDSI (say “oh-mop”)

PHI

protected health information

REDCap

Research Electronic Data Capture (projectredcap.org), provided by Vanderbilt University free to NPO’s for conducting research

SHRINE

Shared Health Research Information NEtwork. (catalyst.harvard.edu/services/shrine/).  Application/webapp for querying patient data, a client of i2b2; returns results from multiple institutions (e.g., the EnACT Network).   Consists of 3 web apps:  Data Steward, Webclient, and Dashboard.

TriNetX

Multi-institution research network, similar to i2b2+SHRINE