REGISTRIES

Registries
Edwin Ocasio
National University, HTM-520
Professor Mark Branning

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Registries
The Greek physician Hippocrates sought a logic to sickness almost 2,500 years ago. He is
the first person recognized to have examined the relationships between the occurrence of disease
and environmental influences. He differentiated between endemic diseases usually found in some
places but not in others and epidemic diseases that are seen at some times but not others (Merrill,
R., 2010). He accomplished this medical feat without the use of one of the most powerful tools
in epidemiology known as registries, more specifically medical registries. The National
Committee on Vital and Health Statistics defines a registry as:
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 health-related event, or prior exposure to substances (or circumstances) known or suspected
to cause adverse health effects.
Registries are used as a source of surveillance and research, do not require intervention as
they are purely descriptive. It is a secondary record with less details than an electronic health
record.
Registries and HIT
The Health Information Technology for Economic and Clinical Health (HITECH) Act of
2009, an initiative enacted as part of the American Recovery and Reinvestment Act (ARRA)
aimed at accelerating the adoption of health information technology (HIT) by the health care
industry, health care providers, consumers, and patients. Administered by the Office of the
National Coordinator (ONC), it endeavored to use the most advanced health information
technology and use the electronic exchange of health information to enable improvements in
health care quality, increase affordability, and improve health care outcomes for all Americans.

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Benefits
More than 130 million Americans live with chronic diseases which account for 70% of all
deaths in the United States. The medical care costs of people with chronic diseases account for
more than 75% of the nations $2 trillion medical care costs. Registries target certain conditions
because medical expenses are unevenly distributed evident by the fact that most health care
expenses are spent treating patients with a few chronic conditions. By focusing their efforts on a
particular disease, group of similar diseases, or specific exposure registry data is collected on
individuals from multiple sources, such as physician records, hospital summaries, pathology
reports, and vital statistics. Besides reducing costs, improving outcomes, and being a source for
clinical trials and conducting research, registries are used for:

Estimating magnitude of a problem

Determining the incidence of disease
Examining trends of disease over time
Identifying groups at high risk
Evaluating health effects of specific exposures
Source of clinical trials and conducting research

One such registry, the San Diego Regional Immunization Registry (SDIR) is an
immunization information system, which is part of the statewide California Immunization
Registry (CAIR). According to the SDIR website, the purpose of these registry is to: a) assist
providers in evaluating the immunization status of their patients; b) facilitate the issuance of
vaccination reminders to patients by providers and public health officials; c) permit public health
officials to assess vaccination coverage within a community and identify any subgroups who
may need targeted interventions. It provides secure and confidential sharing of an individual's
immunizations to patient, parents, and doctors. It tracks what shots that person has received and
which shots are needed.
Relationship to Meaningful Use

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About 40% of meaningful use (MU) requirements involve health information technology
to meet their reporting objectives. The Centers Medicare & Medicaid Services (CMS.gov)
website describe how providers and health organizations must meet public health criteria for
submitting electronic data to immunization registries. Table 1 list the requirements for the menu
objective of Stage 1 and the Core objective of Stage 2.
Stage 1 - Menu 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

Stage 2 - Core Objective

Capability to submit
electronic data to immunization
registries

Successful ongoing
submission of electronic
immunization data from Certified
EHR Technology to an
immunization registry
Table 1. Comparison of Stage 1 Menu Objective and Stage 2 Core Objective
Stage 3 is likely to enhance (immunization) functionality to permit clinicians to view the
entire immunization registry/immunization information system record and support bi-directional
information exchange.
Registry Standards
Participating providers and facilities must meet the criteria for having the capability and
ongoing submission of data from their OCN-certified EHR using the Health Level 7 (HL7)
standard protocol. This protocol will provide the interoperability with an Immunization
Information System. The CDC's National Center of Immunization and Respiratory Diseases
(NCIRD) developed and maintains HL7 Table 0292, Vaccine Administered (CVX). It includes
both active and inactive vaccines available in the US. CVX codes for inactive vaccines allow
transmission of historical immunization records. Tables 2 describes some of the codes, names,
and descriptions of popular immunizations.

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CVX Code
143

Short Description
Adenovirus types 4 and 7

Full Vaccine Name

Adenovirus, type 4 and
type 7, live, oral

24
27
160

anthrax
anthrax vaccine
botulinum antitoxin
botulinum antitoxin
Influenza A monovalent
Influenza A
(H5N1), ADJUVANTEDmonovalent (H5N1),
2013
adjuvanted
Table 2. HL7 Standard Code Set CVX Vaccines Administered

Notes
This vaccine is
administered as 2
tablets.

Approved by FDA
2013

Companies and Standards Groups

The Office of the National Coordinator for Health Information Technologys (ONC)
Office of Science & Technology (OST) has initiatives underway to standardize these
fundamental building blocks of interoperability:

meaning through the use of standardized healthcare vocabularies,

structure by leveraging standards in HL7,
transport using secure email protocols,
security through National Institute of Standards and Technology (NIST)-

adopted encryption standards, and

services through open, and accessible application programming interfaces

(APIs).
There are several relevant entities involved in Health Information Technology standards.
The Healthcare Information Technology Standards Panel serves as a partnership between the
public and private sectors with the purpose of identifying a widely accepted set of standards for
interoperability of health care applications. Another player in the interoperability arena is the
Certification Commission for Health Information Technology (CCHIT). This is a private
nonprofit organization with the sole public mission of accelerating the adoption of robust,
interoperable health information technology by creating a credible, efficient certification process.

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Many more companies and organization, shown in Table 3, play a critical role in developing and
promoting standardization of health information exchange.
Group Year established
Mission
CDISC
2000
Developing and supporting data
standards.
HL7
1987
Producing specifications and protocols
for clinical and administrative health
care data.
HIMSS
1961
Knowledge sharing, advocacy, and
collaboration.
EHRA
2004
Creating interoperability between
existing EHRs.
IHE
1997
Providing a link point between the
standards that exist and the problems
among the industry that need to be
solved.
HITSP
2005
Partnering with public and private
sectors to achieve standards to support
interoperability among health care
software applications.
CCHIT
2004
Defines the requirements for an EHR to
be certified in the United States.

Relevant
standards/specifications
CDASH
CDA, RIM, CCD

EHRA Interoperability
Roadmap
RFD, CRD

TP50, C76

CCHIT certification criteria

(available at
ww.cchit.org/certify)
Table 3. Relevant Entities in Health Information Technology Standards
Barriers and Data Management Challenges
As with any new technology, there are always challenges that create barriers to successful
implementation. Registries are no exception. Below are some of the issues to overcome:

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
Future Trends

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Registries of all kinds have been successful and beneficial in all aspects of health care,
especially public health. As the technology gains acceptance and funding continues to be
available through incentives, grants, or generated by subscription or fees, registries will continual
to flourish and gain greater acceptance by the health care community. Some of the current and
future trends, listed below, will help registries gain that momentum:

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 Veteran Brain Injury Center (DVBIC)

The Defense and Veterans Brain Injury Center (DVBIC) is a part of the U.S. military
health system. DVBIC's mission is to serve active duty military, their beneficiaries, and veterans
with traumatic brain injuries through state-of-the-art clinical care, innovative clinical research
initiatives and educational programs, and support for force health protection services. DVBIC
fulfills this mission through ongoing collaboration with the DoD, military services, Department
of Veterans Affairs (VA), civilian health partners, local communities, families and individuals
with TBI. They provide the following services:

Registry and tracking military personnel and veterans with TBI

Clinicians report of incidences to a central registry
Medical centers collect emergency department and outpatient visits.
Appropriate educational obtain appropriate service
receive follow-up clinical contacts, and receive training materials
Takeaways

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Over the past years the number of medical registries has increased sharply and are being
intertwined into the initiatives driving the expansion of health information technology through
HIE. There are a few things to remember about registries.

An organized system for the collection, storage, retrieval, analysis, and

sharing of information
o
not a electronic health record
o
uses latest and most advance HIT & HIE
o
source of clinical trials and conducting research
o
secure access for patient, parents, and doctors

Meaningful Use
o
successful ongoing submission of electronic data

Standards
o
meaning, structure, transport, security, services

Challenges
o
developing the managerial and technical capability to implement
References
FAQ on Public Health Registries. (n.d.). FAQ on Public Health Registries. Retrieved June 3,
2014, from http://ncvhs.hhs.gov/9701138b.htm
Gliklich RE, Dreyer NA, editors. Registries for Evaluating Patient Outcomes: A User's Guide.
2nd edition. Rockville (MD): Agency for Healthcare Research and Quality (US); 2010
Sep. Appendix C, Relevant Entities in Health Information Technology Standards.
Available from: http://www.ncbi.nlm.nih.gov/books/NBK49445/
HealthIT.gov. (n.d.). Immunization Registries Data Submission. Retrieved June 3, 2014, from
http://www.healthit.gov/providers-professionals/achieve-meaningful-use/core-measures2/immunization-registries-data-submission
HealthIT.gov. (n.d.). HITECH Programs & Advisory Committees. Retrieved June 3, 2014, from
http://www.healthit.gov/policy-researchers-implementers/hitech-programs-advisorycommittees.

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HealthIT.gov. (n.d.). Official Information about HIE Standards and Interoperability. Retrieved
June 3, 2014, from http://www.healthit.gov/providers-professionals/standardsinteroperability.
Merrill, R. M. (2010). Chapter 2, Historic developments in epidemiology. Introduction to
epidemiology (5th ed., pp. 22-23). Sudbury, Mass.: Jones and Bartlett Publishers.
SDIP Website: CAIR~SDIR: About CAIR~SDIR. (n.d.). SDIP Website: CAIR~SDIR: About
CAIR~SDIR. Retrieved June 3, 2014, from http://www.sdiz.org/CAIR-SDIR/about.html
Vachon, D. (n.d.). Father of Modern Epidemiology. Father of Modern Epidemiology. Retrieved
June 3, 2014, from http://www.ph.ucla.edu/epi/snow/fatherofepidemiology.html