Natasha Moore Recommendations For Data Exchange Standards Registry Implementation Final
Natasha Moore Recommendations For Data Exchange Standards Registry Implementation Final
In presenting this thesis as a partial fulfillment of the requirements for an advanced degree from Emory
University, I hereby grant to Emory University and its agents the non-exclusive license to archive, make
accessible, and display my thesis in whole or in part in all forms of media, now or hereafter known, including
display on the world wide web. I understand that I may select some access restrictions as part of the online
submission of this thesis. I retain all ownership rights to the copyright of the thesis. I also retain the right to
use in future works (such as articles or books) all or part of this thesis.
________________________________________________________________ _______________
Signature of Student Date
RECOMMENDATIONS FOR DATA EXCHANGE
STANDARDS UPDATES AND REGISTRY
IMPLEMENTATION
By
Natasha A. Moore
Degree to be awarded: M.P.H.
Executive MPH
________________________________________________________________________
Melissa Alperin EdD, MPH, MCHES Date
________________________________________________________________________
Laurie Gaydos, PhD Date
Abstract
This thesis documents recommendations for data exchange standards that is important in public health
today. The reasons for this are numerous and complex, however, inadequate data to support public health
and healthcare entities has been identified as an area which is essential to making both healthcare and
public health efforts more effective. Specially, lack of data collection from electronic health records
(EHR) and; electronic laboratory reports (ELR) has been identified as a key challenge.
Georgia Department of Public Health identifies inadequate data collection as a reason for limited funding.
Technology can help change this trend by collecting required data attributes. Bridging data gaps will
ensure generation of electronic case reporting (eCR) form the electronic health records encounter form
which is transmitted online through State Electronic Notifiable Disease Surveillance System (SENDSS).
In the United States, the Centers for Disease Control and Prevention (CDC) estimate adults diagnosed
with diabetes might be predisposed to CKD. As individuals age, kidney disease worsens even though
medical intervention and treatment is administered. Over time, individuals may need a kidney transplant
and dialysis while waiting for a donor. There is a need to build a national cloud based commercial
compliant kidney registry.
TABLE OF CONTENTS
CHAPTER 1: INTRODUCTION .....................................................................................................2
Appendix A ......................................................................................................................................... 26
1
2
CHAPTER 1: INTRODUCTION
The purpose of the thesis will make recommendations for data exchange standards and recommendations
for new healthcare registry.
Specially, lack of data collection from electronic health records (EHR) and; electronic laboratory reports
(ELR) has been identified as a key challenge. Additionally, according to Georgia Department of Public
Health (2017), “incomplete reporting leads to under-estimation of the impact of HIV in Georgia limits
funding for services among HIV populations.”1
Despite the focus on sexually transmitted infections (STIs) interventions, HIV/AIDS has increased in
Georgia. The reasons are numerous and complex. However, inadequate data to support public health and
healthcare entities has been identified as an area which is essential to making both healthcare and public
health efforts more effective.
The data exchange gap between electronic health records (EHR) and electronic laboratory reporting
(ELR) systems is due to lack of reportable condition trigger codes (RCTC).
Technology can help change this trend by collecting required data attributes. Bridging data gaps will
ensure generation of electronic case reporting (eCR) form the electronic health records encounter form
which is transmitted online through State Electronic Notifiable Disease Surveillance System (SENDSS).
For the new registry implementation, FHIR (Fast Healthcare Interoperability) framework as new
emerging technologies to enhance or upgrade current ELR, EHR, and SENDSS data collection processes
to support existing public health informatics architecture. FHIR API framework supports interoperability
of data exchange between public health entities which is not possible with current health language seven
version 2 (HL7 V2). Further, this framework includes features from HL7 versions 2 and 3 utilizing the
latest web technologies.2 The intended audience for the FHIR API recommendations.
Hospitals
Clinics
Local health departments
Georgia Department of Public Health (GDPH)
Centers for Disease Control & Prevention (CDC)
1 The Georgia Department of Public Health 2015. HIV Surveillance Fact Sheet, Georgia 2015. Retrieved on January 31, 2017
from https://dph.georgia.gov/sites/dph.georgia.gov/files/HIV_EPI_Fact%20Sheet_Georgia%202015_04.14.17.pdf
2 Core Point Health. HL7 FHIR Resources. Retrieved on September 17, 2017 from https://corepointhealth.com/fhir
CHAPTER 2: DATA EXCHANGE
There is a business need for this recommendations due to current spending by the federal government.
Spending is estimated at $27 million each year in the United States on HIV/AIDS programs and research.
3
In the United States, over one million individuals are living with HIV/AIDS and one out of eight
individuals are unaware they are infected.4 Also, data reporting barriers when reporting new cases of
HIV/AIDS. The federal government is aware of the burden and has generated federal funding to decrease
this burden. In the past reporting was specific to a geographical area.5
Therefore, there is a business need for accurate and timely data collection and exchange from ELR and
EHR systems. It is necessary from a national surveillance standpoint; critically imperative for policy
changes and strategies’ in accordance with Healthy People 2020 goals of prevention and reduction of this
epidemic.6
ELR and EHR adequate data collection and exchange methods between federal, state and local level will
assist with monitoring prevalence, incidence, morbidity and mortality rates for populations at high risks in
an effort to prevent new infections and improve health outcomes.
Data exchange is vital to public health national initiatives which can become impeded when case data is
not collected according to public health standards outlined which affects timeliness and sensitivity of
data. The goal is to reduce the number of incomplete case data reported via ELR and EHR.
Further, FHIR new technology recommendation will support high data quality critical to surveillance
systems since useful data drives resource allocation, prevention, treatment, and new policies reducing
risks in an effort of creating positive health outcomes.
Improving the number of incomplete HIV/AIDS case data reported via ELR and EHR. Additionally,
reduce the number of new HIV/AIDS infections in accords with Healthy People 2020 objective.
The objectives of the EAIS for Electronic Lab Reporting are as follows:
Increase data elements and completeness of data collected and exchanged from ELR and EHR.
https://www.ncbi.nlm.nih.gov/books/NBK201369/
6 Healthy People 2020.gov. HIV Overview. Retrieved on September 17, 2017 from https://www.healthypeople.gov/2020/topics-
objectives/topic/hiv
Improve timeliness of case data collected and exchange necessary for epidemiological
investigations.
The high level requirements for the data exchange recommendations are listed below in the following
defining the product, service or result must meet in order for the project objectives to be satisfied.
2 Architecture Development
4 Cloud Solutions
5 Patient Privacy
The major deliverables for the data exchange recommendations are listed below in the following table
defining the product, service or results that must meet in order for the project objectives to be satisfied.
The inclusive and exclusive boundaries of this thesis project will be implemented in the United States.
The goals exclude measuring outcomes related to other sexually transmitted infections such as:
chlamydia, herpes, syphilis and gonorrhea. This project application will be limited to ELR and EHR
systems.
Patient privacy’s is a major concern, so only restricted access to patient information will be available. For
those receiving treatment and not using governmental or private insurance payors will be omitted.
HIV/AIDS is an epidemic in the United States approximately 1.2 million individuals living with this
disease. HIV/AIDS diseases burden has greatly affected the federal resources allocation for prevention
and treatment programs in geographical areas affected most in certain populations.
The proposed solution will make recommendations for standard enhancements to current ELR and EHR
systems. Additionally, inadequate data collected from ELR and EHR processes of transmitting data to
CDC eHARS surveillance system. Aside from data collection methods, this project will investigate
clinical workflows to identify deficiencies.
Data exchange is vital to public health national initiatives which can become impeded when case data is
not collected affecting timeliness and sensitivity of data. The goal is to reduce the number of incomplete
case data reported via ELR and EHR.
These recommendations will support high data quality which is critical to surveillance systems since
useful data drives resource allocation, prevention, treatment, and new policies reducing risks in an effort
of creating positive health outcomes.
Additionally, this data can be utilized for research, resources allocation, new policies and treatment plans.
Improving HIV/AIDS evidence based practices.
The high-level timeline projected to enhance or upgrade current ELR, EHR, and SENDSS data collection
processes to support existing public health informatics architecture is 2–3 months. The estimated budget
of $750,000 to $1,000,000 is being requested. This budget includes new equipment, software and services
needed for this ELR update.
The level of effort needed for design, build, test and deployment of project are:
Project Manager
Developer
Business Analyst
Network Administrator
Data Architecture
Below figure 1 projected timeline illustrates dates design, build, testing and deployment:
ELR Project Plan & Design ELR Requirements Analysis ELR Build & Test ELR System Deployment
Completed Completed
Completed
Next, the proposed solution will support interoperability of standard HL7 health exchange standards
transmitting clinical data and integrating ELR, and EHR systems. Additionally, inadequate data collected
from ELR and EHR processes. Further, complete data sets will be transmitted into eHARS surveillance
system.
Current data collection methods/techniques illustrate gaps and barriers in how data is collected.
According to NCBI, majority of the barriers are associated with data collection methods/techniques.8
Resulting in underreporting and the need data recapture that delays reporting to CDC.
Health Information Exchange (HIE): The health information exchange will send results
to the state department DPH SendSS system.
Electronic Laboratory Reporting System: The new FHIR technology will be utilized by
hospitals, laboratories (ARUP, References Lab, LabCorp & Quest), public health
departments and correctional facilities will require new architectures such as server.
o Centers for Disease Control & Prevention (CDC): eHARS reporting system
collects data on HIV/AIDS for surveillance and policy making purposes.
Information will flow diagram in figure 2 illustrates patients: hospitals, clinics, laboratories, public health
departments and correctional facilities. The infrastructure and software services needed are: hospital
servers, lab servers, correctional facility servers, GDPH SendSS web application and CDC eHARS
Surveillance system.
8NCBI. Monitoring HIV Care in the United States: Indicators and Data Systems. Retrieved on October 8, 2017 from
https://www.ncbi.nlm.nih.gov/books/NBK201369/
FIGURE 2 INFORMATION FLOW DIAGRAM
The business process is collection of data for HIV/AIDS Surveillance System. The trigger event creates
an alert from las ELR, EHR lab module from hospitals, and health departments are trigger from data
warehouse when positive or confirmed cases of HIV/AIDS lab results are received. Data sent to GDPH
SendSS reporting system for analysis. Incomplete or inaccurate files are held for data recapture.
Complete data sets are transmitted into CDC eHARS system.
The business process model for this thesis Electronic Lab Reporting starts with a trigger event. The
trigger event is a positive or confirmed case of HIV/AIDS lab report. Georgia regulation (O.C.G.A. §31-
12-2(b))9 , requires new positive results be reported to GDPH via SendSS system. The business rules
validate patient demographic data, data of birth, address, CD4 count, viral load, transmission category and
other pertinent data listed on adult case reporting form (ACRF). This information is important for
monitoring if patients are receiving medical care.
Also, the data is vital to identifying trends and determining healthcare disparities between populations.
Further, the collection of HIV/AIDS surveillance data provides a better understanding of the burden of
this disease and effects from a local, state and federal perspective.10
9 Justia US Law. 2010 Georgia Code TITLE 31 – HEALTH CHAPTER 22 - CLINICAL LABORATORIES
§ 31-22-9.2 - HIV tests -- Report of positive results; counseling; violations; exception for insurance coverage; exposure of health
care provider. Retrieved on September 8, 2017 from http://law.justia.com/codes/georgia/2010/title-31/chapter-22/31-22-9-2
10 CDC 2015. Centers for Disease Control and Prevention. HIV/AIDS.
The business architecture identifies public health entities, stakeholders, strategies and key objectives of
hospitals, clinics, public health departments, and CDC related to data exchange.
Lab results in the data/information being sent utilizing HL7 data exchange standards.
This data of information is transmitted to Department of Public Health for analysis of
complete de-identified data which are needed before being exported into CDC eHARS
Surveillance system.
Hospitals, laboratories, public health departments, and correctional facilities transmit lab
results to Georgia Department of Public Health.
The information architecture identifies the data types, sources of data, validate data and identify data
inequalities between population and public health.
HL7 version 2 and 3 supports interoperability to data exchange between population and
public health entities.
Only surveillance data will be added to the new surveillance system.
Data from external sources such as: hospitals, health departments, correctional facilities
and laboratories.
Data can be queried from application/surveillance system to ensure accuracy.
Additionally, a SAS preload process will be included to ensure accurate and complete data.
This implementation plan in table 3 below outlines this system is necessary decrease reporting barriers
when reporting new cases of HIV/AIDS. In 2008, the United States initiatives confidential reporting
which means those testing positives for HIV/AIDS are reported to public health entities.11 An analysis of
HIV/AIDS surveillance data by the CDC surveillance system illustrates missing data elements as a barrier
of underreporting.12 Listed below are major tasks for implementation:
11Ford, Moragan A., Spicer, Mason Carol. Institute of Medicine of the National Academies. Monitoring HIV Care In the United
States. Indicators and Data Systems
https://books.google.com/books?id=CzbbOvkbLiMC&pg=PA237&lpg=PA237&dq=HIV+%22reporting+barriers%22&source=b
l&ots=-
27rLGZ8an&sig=xp0HjTsJ_0AN_1Jjse3l8LW95Sw&hl=en&sa=X&ved=0ahUKEwihhOj037zXAhXJ44MKHekiCz4Q6AEIOD
AD#v=onepage&q=HIV%20%22reporting%20barriers%22&f=false
12 CDC. Morbidity and Mortality Weekly Report (MMWR). Prevalence of Diagnosed and Underdiagnosed HIV Infection -
The major objectives of this project are to implement FHIR as the new emerging technology standard to
eliminate new cases of HIV/AIDS infections and improve outcomes by supporting all individuals affected
by HIV/AIDS. Also, eliminating health disparities that exist among certain populations.13 Strategies
aimed to increases awareness, promote educations and increase access to care. These strategies along
with adequate clinical data collection and exchange:
Support the collection and dissemination of clinical data exchange standards between
public health entities.
Identify best practices centered on prevention and treatment of those affected by
HIV/AIDS.
Support FHIR new emerging technology standard for dissemination evidence based
information to all public health entities.
There were a number of mew emerging technologies considered for architectural impact study. FHIR
API was selected because it can capture and exchange data from population health to public health
surveillance systems. Additionally, it supports data exchange and interoperability in which previous
versions of HL7 standards were not capable. Even EHR vendors: Cerner, Epic, Allscript have adopted
mobile applications. The advantage of the mobile implementation reduces build or development time and
improve efficiency of clinical workflows.14 A second advantage of FHIR is an open standard framework
which can operate across population health EHR system and public health surveillance systems.
Centralization of the library of applications will improve quality of care, research and public health.15
The communication of healthcare application and EHR uses restful web services. Restful web services
will allow real time data exchange of HIV/AIDS new cases data exchange to be transmitted in real time.
13 HIV.gov. National HIV/AIDS Strategies Updated to 2020. Retrieved on November 5, 2017 from
https://www.hiv.gov/federal-response/national-hiv-aids-strategy/nhas-update
14 Corepoint Health. on FHIR: A future framework for EHR integrations. Retrieved on November 5, 2017 from
https://corepointhealth.com/-fhir-new-model-ehr-integrations
15 : An App Platform for Healthcare. Retrieved on November 5, 2017 from https://healthit.org/
The mission the Division of HIV/AIDS (DHAP) mission is prevention and decrease new cases of
HIV/AIDS transmissions and deaths in the United States.16 Adequate data collection and exchange
methods between federal, state and local level should support, monitor prevalence, incidence, morbidity
and mortality rates for populations at high risks in an effort to prevent new infections and improve health
outcomes. Therefore, data management processes and the FHIR API framework as new emerging
technologies to support existing public health informatics architecture.
The vision of these recommendations is not only to focus on the Healthy People 2020 goals of prevention
and reduction of this epidemic. Additionally, reduce the number of incomplete case data reported via
ELR and EHR for those with HIV/AIDS. In the United States, over one million people are living with
HIV/AIDS who may need resources to live long healthy lives. In order to balance resources, adequate
data is needed to identify populations so federal funding is made available to these populations.
Inadequate data leaves these populations without treatment and resources. Adequate data collection,
standards and case definitions are to CDC eHARS surveillance system. CDC and other public health
entities acknowledge reporting delays contribute to data inadequacies and collection techniques. CDC
with the assistance of surveillance programs within their organization evaluate underreporting and delays
in reporting. For this reason, CDC offers jurisdictions technological assistance for enhancing their ELR
systems.17
So, adequate data collection is imperative to public health national initiatives. Therefore,
recommendations of FHIR framework to upgrade current ELR, EHR, and SENDSS will no doubt
improve timeliness and sensitivity of data.
16 CDC. National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Strategic Plan. Division of HIV/AIDS
Prevention 2011 – 2015. Retrieved on September 8, 2017 from https://www.cdc.gov/hiv/pdf/policies_dhap-strategic-plan.pdf
17 NCBI. The Status of the National HIV Surveillance System, United States, 2013. Retrieved on November 12, 2017 from
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4037459/
CHAPTER 3: REGISTRY IMPLEMENTATION
This new registry will analyze death certificates within the last eighteen months. Epidemiologist in
Georgia have observed an increased number of deaths as a result of chronic kidney disease Chronic
Kidney Disease (CKD). Currently, there is no historical surveillance data regarding death due to kidney
disease from a state or federal level. There appears to be a pattern of increasing incidence. To determine
if suspicions are true, a chronic kidney registry is needed.
The incidence of chronic kidney disease cases has increased over the past ten years. Healthy People 2020,
clinical studies illustrated recipients receiving kidney transplants over a 3-year period has decreased
approximately by 5% between 1990 and 1999.18
There is a need to build a national cloud based commercial compliant kidney registry. It must meet
compliancy according to Health Insurance Portability and Accountability Act (HIPAA) since one does
not exist that supports paired donation.19 Paired donation is the process or transplant option of donating a
kidney.
Further, this registry should meaningful share data between entities such as the Department of Motor
Vehicle (DMV), local hospitals electronic health records and chronic surveillance systems.
Next, since there are more recipients than donor. A registry is needed to store antibody and blood type,
tissue type and other pertinent data needed to compatibly match donor and recipients.
Short term effects of this registry is to measure impact of interventions, identify the burden of Chronic
Kidney Disease (CKD), identify comorbidities and track outcomes.
Long term effects of this registry will decrease incidence of kidney disease, treatment effectiveness,
reduce costs, disabilities, improve health disparities and decrease morbidity according to health people
2020 goals and objective. 20 Ultimately, the goal is to exchange data nationwide in an effort to reduce
incidence and implement intervention and treatment programs.
18Healthy People 2020. Chronic Kidney Disease. Retrieved on September 5, 2017 from
https://www.healthypeople.gov/2020/topics-objectives/topic/chronic-kidney-disease
19 University of Pennsylvania 2014. Ellison, Black. A Systemic Review of Kidney Paired Donation: Applying Lessons from
Historic and Contemporary Case Studies to Improve US Model. Retrieved on September 5, 2017 from
http://www.kidneyregistry.org/pages/p365/fulltxt.php
20 Healthy People 2020. Chronic Kidney Disease. Retrieved on September 5, 2017 from
https://www.healthypeople.gov/2020/topics-objectives/topic/chronic-kidney-disease
3.2 REGISTRY IMPLEMENTATION PROBLEM STATEMENT
Data needs for this registry can be classified as primary or secondary based on variable in the registry.
Primary data sources are relevant and reliable which are collected for this registry. This registry will
collect data directly from Chronic Kidney Disease (CKD) patients. Collection of Chronic Kidney Disease
(CKD) primary data will increase reliability, accuracy and completeness of data since requirements are
outlined and tracked for accuracy. 21
An advantage of primary data validates the reliability, timely, and completeness of data collected for the
registry. Analysis of this data is performed routinely to ensure it meets the registry needs.
Secondary data is data collected from other sources and transmitted or imported from other sources into
the registry. Other data sources would include: electronic health records systems (EHR), insurance claims
manager/reimbursement systems, U.S. Census Bureau systems, other registries, and National Death Index
databases.22
Limitations of secondary data are: receiving the data in an unstructured format. The data would require
data cleaning to transform the data in a structured format. Additionally, increase probabilities:
21 NCBI 2017. Registries for Evaluating Patient Outcomes: A User’s Guide [Internet] 3 rd Edition. Data Sources for Registries.
Retrieved on September 26, 2017 from https://www.ncbi.nlm.nih.gov/books/NBK208611/
22 Publication Coursehero, HIM 317 Retrieved on September 5, 2017 from https://www.iarc.fr/en/publications/pdfs-
online/treport-pub/treport-pub43/IARC_Technical_Report_No43_4.pdf
3.3 REGISTRY IMPLEMENTATION TABLE 4 PRIMARY DATA ELEMENTS
Address 30 Alpha/Numeric
City 20 Alpha
County 20 Alpha
State 2 Alpha
Zip Code 5 Numeric
Country 20 Alpha
Race/Ethic Group 15 Alpha
Gender 1 Alpha
Martial Status 1 Alpha
Sex 1 Alpha
Age Diagnosed Chronic Kidney Disease (CKD) 2 Numeric
Birthplace 30 Alpha
Country of Birthplace 30 Alpha
Citizenship Status 20 Alpha
Religion 10 Alpha
Vital Signs (Temperature, Pulse, Respirarion, Blood
40 Numeric
Pressure)
Medications 40 Alpha-numeric
According to Health Language Seven (HL7), this is the current messaging standard for exchanging
administrative and clinical data across multiple healthcare entities in an enterprise application system.
These enterprise application systems are complex platform supporting scalable and interoperable
solutions.23 More specifically, HL7 version 3 is the standard version for registries.24
23HL7 2016. Health Language Severn International. Retrieved on September 5, 2017 from
http://www.hl7.org/implement/standards/
3.4 REGISTRY IMPLEMENTATION DATA STORAGE
Data storage recommendations for the registry implementation is Amazon Simple Storage Service
abbreviated Amazon S3. This storage is scalable for collection, analyzing and storing big data.25
Additionally, Amazon S3 has the capacity of capturing structure and unstructured data. Security
standards used to protect data in motion are SSL (secure socket layer) and TLS (transport layer security).
Security of data at rest is costly and complicated. However, if PHI (protected health information) such as
social security numbers in the Chronic Kidney Disease registry the system administrator should encrypt
the field or the entire registry.
The visualization business intelligence and analytical software to be implemented is Tableau. Tableau
interface is easy to use, secure and supports data governance. Data governance will ensure trusted data
sets are utilized. This BI visualization can be easily understood by healthcare professionals, managers
and technical professionals. Further, datasets can be rapidly created for analysis.
Familial history of Chronic Kidney Disease (CKD) and other morbidities that could result in
Chronic Kidney Disease (CKD).
The number of recipients matched with donors.
Clinical trial studies can determine effectiveness of procedure, medical device, and or a
pharmacologic drug used to treat Chronic Kidney Disease (CKD). Clinical trials provide
information related to diagnosis, intervention, treatment and other health problems that may
contribute to Chronic Kidney Disease (CKD). Additionally, analyze trends based predisposing
factors, genetics, population and geographic locations.
24 HL7 2016. HL7 Version 3 Standard: Registries: Real Time Location Tracking, Release 1 Retrieved on September 5, 2017
from http://www.hl7.org/implement/standards/product_brief.cfm?product_id=212
25 Amazon Web Services. Amazon S3. Object storage built to store and retrieve any amount of data from anywhere. Retrieved
The information flow diagram identifies all stakeholders that will collect data for Chronic Kidney Disease
(CKD) registry. All stakeholder will ensure data quality standards are met. Stakeholders that will collect
data for this Chronic Kidney Disease (CKD) registry are: Centers for Medicaid and Medicare (CMS),
Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), Agency for
Healthcare Research and Quality (AHRQ), Public health regulatory authorities, Department of Motor
Vehicle (DMV), Other Surveillance Systems, hospitals, physician offices, and dialysis clinics.
The project plan is imperative to Chronic Kidney Disease (CKD) Registry so the information technology
team will have a plan to guide them through the process. The project plan will include the following
documents:
Since public health changes, as Informaticians we must readily adopt new applications, infrastructure and
architecture to solve public health issues. These critical components and data structures for this newly
recommended Chronic Kidney Registry (CKD) will use Puppet to manage the cloud based components.
Puppet is an open source management tool supporting: storage, computing, and effective scaling of
workloads. One thing, we must decide is what cloud environment will be utilized. Will it be private of
public clod provider such as: Amazon Web Server, Microsoft, or VM Ware.
Automation so can build new module for Chronic Kidney Disease (CKD) registry as
standards change.
Chronic Kidney Disease (CKD) registry will have reliable virtual networks.
Security and HIPAA compliance
Chronic Kidney Disease (CKD) low cost build, deployment and maintenance
Since public health changes as Informaticians we must readily adopt new applications, infrastructure and
architecture to solve public health issues. The newly developed chronic kidney registry will use Puppet to
manage the cloud based components. Puppet is an open source management tool supporting: storage,
computing, and effective scaling of workloads. One thing, we must decide is what cloud environment
will be utilized. Will it be private of public clod provider such as: Amazon Web Server, Microsoft, or
VM Ware.
The table below illustrates data, data sources and a description of the data sources recommended for the
registry implementation project.
Data Data Sources / Application Description
Motor Vehicle Data Department of Motor Vehicle Data of available donors in given
(Driver Application System) population.
Centers for Disease Control & Chronic Surveillance System Data related to chronic conditions
Prevention (CDC) such as: hypertension (HTN),
diabetes (DM), myocardial
infaraction (MI), cerebrovascular
accident (CVA) and other long
term health conditions.
Clinician Reported Data Hospitals Electronic Health Data is specific and relevant.
Records (EHR: Allscripts, Cerner,
Epic)
Electronic Health Records (EHR) Georgia Public Health Data contain routine exam, other
Departments encounter level data and clinical
claim data.
Death Registry Georgia DPH Vital Records Complete centralized death data.
Mortality data complete so can
(Registry) track patient within care/treatment
& lost to care. Updated weekly.
Electronic Health Records (EHR) Electronic Health Records (EHR: Data contain routine exam, other
Data Abstraction Allscripts, Cerner, Epic) encounter level data and clinical
claim data.
New emerging technology has a higher probability of risks compared to older technologies. FHIR API
utilization for this registry identified risks are as follows:
Risk of loss of service due to internet outage.
Risk of unauthorized user accessing data and possible installation of malware.
Risk of possible security and data breach.
Risk of inability to track, investigate issues and connectivity issues.
Risk of HIPAA privacy and security compliancy.
Risk of data loss.
To mitigate the above mention risks for the Chronic Kidney Disease (CKD) registry, the plan is to:
1. Regularly review and upgrade cloud security protocols and hire vendors that specialize in
cloud security to make recommendations regularly.
2. Implement two factor authentications using a google smart phone application such as DUO or
Authy.
3. Make sure the cloud computing organization encrypts data at rest and in motion.
4. Single Sign On which allows a user to sign on one time to applications and is automatically
signed into other applications for which permission has been granted.
5. Ensure current web browsers are up to date and upgraded when new versions are released.
Public health consistently changes and response to healthcare threats are imperative especially based on
populations affected. Therefore, I highly recommend puppet open source management tool due to
scalability, user interface and readily available source code package in this tool. As epidemiologist
working Georgia Local Health Department, the need to determine the incidence of Chronic Kidney
Disease (CKD), this registry collection of surveillance data can serve to identify trends, risk factors and
determine treatment plan for those affected.
Below is the Chronic Kidney Disease (CKD) database schema which illustrates the patient table as a
many to many relationships with the gender, organization and ICD10 tables. The gender, organization
and ICD10 table have a one to one relationship to the patient table.
CHAPTER 4: CONCLUSION
Recommendations for new proposed data exchange and registry implementation identified inadequate
data exchange between population health and public health entities as a challenge. The Centers for
Disease Control and Prevention (CDC) and the Division of HIV/AIDS (DHAP) mission is prevention and
decrease new cases of HIV/AIDS transmissions and deaths in the United States.26 As a result, CDC
Enhanced HIV/AIDS Reporting System (eHARS) surveillance de-identified data suggest 50,000 new
individuals infected each year.27 From a state perspective, Georgia Department of Public Health (GDPH)
State Electronic Notifiable Disease Surveillance System (SendSS) data suggest of Georgia’s population
less than half are receiving treatment due to inadequate data to support public health and healthcare
entities has been identified as the primary reason.
Georgia regulation (O.C.G.A. §31-12-2(b))28 require new positive results reporting to GDPH. In the
United States, the federal government yearly spends over $27 billion29 on prevention, treatment and
research programs. This illustrates HIV/AIDS epidemic is a serious public health threat.
In 2013, approximately 11,200 people died from HIV/AIDS and related medical conditions.30 Specially,
lack of data collection from electronic health records (EHR) and; electronic laboratory reports (ELR) has
been identified as a key challenge. Additionally, GDPH suggest lack of complete data reported has led to
limited funding for individuals infected affected by HIV/AIDS. Resulting in reduction of research,
federal funding and healthcare resources.
Further, these recommendations for an ELR system will utilize FHIR API is an open standard framework
that can operate across population health EHR system and public health surveillance systems.
26 CDC. National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Strategic Plan. Division of HIV/AIDS
Prevention 2011 – 2015. Retrieved on September 8, 2017 from https://www.cdc.gov/hiv/pdf/policies_dhap-strategic-plan.pdf
27 Prejean J, Song R, Hernandez A, Ziebell R, Green T, et al. (2011) Estimated HIV Incidence in the United States, 2006–2009.
§ 31-22-9.2 - HIV tests -- Report of positive results; counseling; violations; exception for insurance coverage; exposure of health
care provider. Retrieved on September 8, 2017 from http://law.justia.com/codes/georgia/2010/title-31/chapter-22/31-22-9-2
29 HIV.gov 2017. Budget. Federal Funding for HIV/AIDS. Retrieved on September 8, 2017 from
http://law.justia.com/codes/georgia/2010/title-31/chapter-22/31-22-9-2
30 NCBI. Insights from the Ebola response to address HIV and tuberculosis. Retrieved on November 12, 2017 from
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4817838/
These proposed solutions / recommendations will monitor prevalence, incidence, and morbidity and
mortality rates for populations at high risks in an effort to prevent new infections and improve health
outcomes. Additionally, FHIR framework will provide data to identify effective treatment options.
These data exchange standards and open standard framework can effective and efficient operate across
population health and public health entities. The infrastructure for this registry currently exist and was
implemented during the early stages of meaningful use. So, HL7 standards of exchanging population
health data to this registry will meets all necessary standards of exchange. The architectural
infrastructure currently exist and was implemented during the early stages of meaningful use for both
proposed solutions.
In conclusion, these solutions will align with Healthy People 2020 goals and objective of decreasing the
incidence of kidney disease and new cases of HIV/AIDS. Leading to treatment effectiveness, reduced
costs, disabilities, improve health disparities and decrease morbidity according to health people 2020
goals and objective. 31 While, improved and increasing:
1. Research
2. Federal funding
3. Healthcare resources
4. Access to quality care
31 ODPHP Office of Prevention and Health Promotion Healthy People 2020. Chronic Kidney Disease. Retrieved on September
5, 2017 from https://www.healthypeople.gov/2020/topics-objectives/topic/chronic-kidney-disease
APPENDIX A
1
The Georgia Department of Public Health 2015. HIV Surveillance Fact Sheet, Georgia 2015. Retrieved
on January 31, 2017 from
https://dph.georgia.gov/sites/dph.georgia.gov/files/HIV_EPI_Fact%20Sheet_Georgia%202015_04.14.17.
pdf
2
Core Point Health. HL7 FHIR Resources. Retrieved on September 17, 2017 from
https://corepointhealth.com/fhir
3
HIV.gov 2017. Budget. Retrieved on September 14, 2017 from https://www.hiv.gov/federal-
response/funding/budget
4
Centers for Disease Control and Prevention. HIV in the United States: At A Glance. Available from:
https://www.cdc.gov/hiv/statistics/overview/ataglance.html
5
NCBI. Monitoring HIV Care in the United States: Indicators and Data Systems. Retrieved on
November 12, 2017 from https://www.ncbi.nlm.nih.gov/books/NBK201369/
6
Healthy People 2020.gov. HIV Overview. Retrieved on September 17, 2017 from
https://www.healthypeople.gov/2020/topics-objectives/topic/hiv
7
CDC 2017. HIV Surveillance Report. Retrieved on October 7, 2017 from
https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-report-2015-vol-27.pdf
8
NCBI. Monitoring HIV Care in the United States: Indicators and Data Systems. Retrieved on October
8, 2017 from https://www.ncbi.nlm.nih.gov/books/NBK201369/
9
Justia US Law. 2010 Georgia Code TITLE 31 – HEALTH CHAPTER 22 - CLINICAL
LABORATORIES
§ 31-22-9.2 - HIV tests -- Report of positive results; counseling; violations; exception for insurance
coverage; exposure of health care provider. Retrieved on September 8, 2017 from
http://law.justia.com/codes/georgia/2010/title-31/chapter-22/31-22-9-2
10
CDC 2015. Centers for Disease Control and Prevention. HIV/AIDS.
Retrieved on October 9, 2017 from https://www.cdc.gov/hiv/statistics/surveillance/systems/index.html
11
Ford, Mragan A., Spicer, Mason Carol. Institute of Medicine of the National Academies. Monitoring
HIV Care In the United States. Indicators and Data Systems
https://books.google.com/books?id=CzbbOvkbLiMC&pg=PA237&lpg=PA237&dq=HIV+%22reporting
+barriers%22&source=bl&ots=-
27rLGZ8an&sig=xp0HjTsJ_0AN_1Jjse3l8LW95Sw&hl=en&sa=X&ved=0ahUKEwihhOj037zXAhXJ44
MKHekiCz4Q6AEIODAD#v=onepage&q=HIV%20%22reporting%20barriers%22&f=false
12
CDC. Morbidity and Mortality Weekly Report (MMWR). Prevalence of Diagnosed and
Underdiagnosed HIV Infection - United States, 2008 – 2012. Retrieved on November 13, 2017 from
https://www.cdc.gov/hiv/pdf/policies_13_238558_HIVSurveillance_NHAS_v6_508.pdf
13
HIV.gov. National HIV/AIDS Strategies Updated to 2020. Retrieved on November 5, 2017 from
https://www.hiv.gov/federal-response/national-hiv-aids-strategy/nhas-update
14
Corepoint Health. on FHIR: A future framework for EHR integrations. Retrieved on November 5,
2017 from https://corepointhealth.com/-fhir-new-model-ehr-integrations
15
An App Platform for Healthcare. Retrieved on November 5, 2017 from https://healthit.org/
16
CDC. National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Strategic Plan.
Division of HIV/AIDS Prevention 2011 – 2015. Retrieved on September 8, 2017 from
https://www.cdc.gov/hiv/pdf/policies_dhap-strategic-plan.pdf
17
NCBI. The Status of the National HIV Surveillance System, United States, 2013. Retrieved on
November 12, 2017 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4037459/
18
Healthy People 2020. Chronic Kidney Disease. Retrieved on September 5, 2017 from
https://www.healthypeople.gov/2020/topics-objectives/topic/chronic-kidney-disease
19
University of Pennsylvania 2014. Ellison, Black. A Systemic Review of Kidney Paired Donation:
Applying Lessons from Historic and Contemporary Case Studies to Improve US Model. Retrieved on
September 5, 2017 from http://www.kidneyregistry.org/pages/p365/fulltxt.php
20
Healthy People 2020. Chronic Kidney Disease. Retrieved on September 5, 2017 from
https://www.healthypeople.gov/2020/topics-objectives/topic/chronic-kidney-disease
21
NCBI 2017. Registries for Evaluating Patient Outcomes: A User’s Guide [Internet] 3rd Edition. Data
Sources for Registries. Retrieved on September 26, 2017 from
https://www.ncbi.nlm.nih.gov/books/NBK208611/
22
Publication Coursehero, HIM 317 Retrieved on September 5, 2017 from
https://www.iarc.fr/en/publications/pdfs-online/treport-pub/treport-
pub43/IARC_Technical_Report_No43_4.pdf
23
HL7 2016. Health Language Severn International. Retrieved on September 5, 2017 from
http://www.hl7.org/implement/standards/
24
HL7 2016. HL7 Version 3 Standard: Registries: Real Time Location Tracking, Release 1 Retrieved on
September 5, 2017 from http://www.hl7.org/implement/standards/product_brief.cfm?product_id=212
25
Amazon Web Services. Amazon S3. Object storage built to store and retrieve any amount of data from
anywhere. Retrieved on September 7, 2017 from https://aws.amazon.com/s3/?p=tile
26
CDC. National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Strategic Plan.
Division of HIV/AIDS Prevention 2011 – 2015. Retrieved on September 8, 2017 from
https://www.cdc.gov/hiv/pdf/policies_dhap-strategic-plan.pdf
27
Prejean J, Song R, Hernandez A, Ziebell R, Green T, et al. (2011) Estimated HIV Incidence in the
United States, 2006–2009. PLoS ONE 6(8): e17502. doi:10.1371/journal.pone.0017502 Retrieved on
September 8, 2017 from www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017502
28
Justia US Law. 2010 Georgia Code TITLE 31 – HEALTH CHAPTER 22 - CLINICAL
LABORATORIES
§ 31-22-9.2 - HIV tests -- Report of positive results; counseling; violations; exception for insurance
coverage; exposure of health care provider. Retrieved on September 8, 2017 from
http://law.justia.com/codes/georgia/2010/title-31/chapter-22/31-22-9-2
29
HIV.gov 2017. Budget. Federal Funding for HIV/AIDS. Retrieved on September 8, 2017 from
http://law.justia.com/codes/georgia/2010/title-31/chapter-22/31-22-9-2
30
NCBI. Insights from the Ebola response to address HIV and tuberculosis. Retrieved on November 12,
2017 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4817838/
31
ODPHP Office of Prevention and Health Promotion Healthy People 2020. Chronic Kidney Disease.
Retrieved on September 5, 2017 from https://www.healthypeople.gov/2020/topics-
objectives/topic/chronic-kidney-disease