Registries

Introduction
2,500 years ago
Hippocrates (460 - 377 BC)
occurrence of disease
environmental influences

Distinguish between diseases that are

"visited upon" a population (epidemic)
"reside within" a population (endemic).

Whats a Registry?
An organized system for the collection, storage,
retrieval, analysis, and sharing of information on
persons who have a disease, a condition that
predisposes to the occurrence of a healthrelated event, or prior exposure to substances
(or circumstances) known or suspected to cause
adverse health effects.
use for surveillance and research
purely descriptive and no intervention
not a database or medical record

Registries and HIT

HITECH Act of 2009
American Recovery and Reinvestment Act
Accelerate the adoption of health information
technology (HIT)

ONC
use the most advanced health information
technology
use the electronic exchange of health
information

Benefits of Registries

Magnitude of a problem
Incidence of disease
Trends of disease over time
Identifying groups at high risk
Health effects of specific exposures
Source of clinical trials and
conducting research

CAIR~SDIR

Secure and confidential sharing of an

individual's immunizations
Patient, parents, and doctors can see info
What shots that person has received
Which shots are needed

Registries and Meaningful Use

Stage 1 - Menu Objective

Stage 2 - Core Objective

Capability to submit
electronic data to
immunization registries
Performed at least one
test of certified EHR
technology's capacity to
submit electronic data
to immunization
registries

Capability to submit
electronic data to
immunization registries
Successful ongoing
submission of
electronic immunization
data from Certified EHR
Technology to an
immunization registry

Registry Standards
Immunizations
HL7 Standard
vaccines administered

HL7 Implementation Specifications

immunization messaging

Office of the National Coordinator for

Health Information Technologys (ONC)
Office of Interoperability and Standards (OIS)
meaning, structure, transport, security, services

Companies/Standards Group
The Healthcare Information Technology
Standards Panel (HITPS)
The Certification Commission for Health
Information Technology (CCHIT)
CDISC
HIMSS
IHE

HL7
EHRA

Barriers and Challenges

Complexity and acceptance of technology
Developing the managerial and technical
capability to implement
Reliability of the data
Ownership of the data
Legal issues
Security and accessibility
Cost of implementing and maintaining

Registry Future Trends

Better patient and outcome tracking
Improved work-flow efficiency
Highly functional, multi-disease tools
Data from existing EHR
Use registries for proactive population
health management
Patient-centered interactions and
participation

Defense and Veterans Brain Injury Center

Registry and tracking military personnel
and veterans with TBI.
Clinicians report to a central registry.
Medical centers collect emergency
department and outpatient visits.
obtain appropriate services
receive follow-up clinical contacts, and
receive appropriate educational materials.

Takeaways
An organized system for the collection, storage, retrieval,
analysis, and sharing of information

not a database or medical record

use latest and most advance HIT & HIE
source of clinical trials and conducting research
secure access for patient, parents, and doctors

Meaningful Use
successful ongoing submission of electronic data

Standards
meaning, structure, transport, security, services

Challenges
developing the managerial and technical capability to implement

Links
HHS.gov
Department of Health and Human Services

HealthIT.gov
Health Information Technology

CMS.gov
Centers for Medicare & Medicaid Services

EHR - Meaningful Use (Graduate Project Website)

Empowering Patients

Empowering Patients