**A Tale of Two Agencies:**

**The Quest for Developing a Health Data Sharing Agreement**

# 2007 - 2008 

# 

#  Environmental Public Health Leadership Institute Fellow:

# 

#  Greg Kearney; Dr.P.H., M.P.H., R.S.

*Environmental Epidemiologist;Florida Department of Health*

*4052 Bald Cypress Way,*

*Tallahassee, Florida 32399*

*(850) 245-4577*

*Greg_Kearney@doh.state.fl.us*

# 

# Mentor:

### CAPT Steve Inserra, REHS, MPH

*Environmental Epidemiologist;* Agency for Toxic Substances and Disease
Registry

Department of Homeland Security,

Health Investigations Branch

# Acknowledgements:

### 

### **Meade Grigg** 

### *Director and State Registrar, Florida Department of Health, Office of Planning, Evaluation, Data Analysis and Statistics*

### **Carina Blackmore, DVM., Ph.D.**

*State Public Health Veterinarian, Florida Department of Health,
Division of Environmental Health*

### 

### **Denise Love** 

### *National Association of Health Data Organization*

### 

### **Carolyn Turner** 

### *Agency for Health Care Administration*

### **Judith Qualters, Ph.D.**

*Chief, Health Tracking Branch, Centers for Disease Control and
Prevention,*

![](media/image1.jpeg){width="1.3756944444444446in"
height="0.6368055555555555in"}

# EXECUTIVE SUMMARY:

Hospital data can be used by epidemiologists and public health officials
to monitor the health status of a community and to perform disease
surveillance. Although primarily used for medical billing purposes,
hospital data can serve as a rich source of health information providing
valuable insight for evaluating selected chronic and acute diseases, and
establishing and reporting health trends in the population.

In Florida, the Agency for Health Care Administration (AHCA) collects
and manages all hospital data for the entire state. Hospital data is
considered confidential, and to receive this data, all applicants,
including the Florida Department of Health (FDOH) must submit an annual
"request for data" application. From a state health department's
perspective, requesting this data has proven to be a repetitive, lengthy
and time consuming process. This leadership project utilizes methods
focused on recognizing, describing and identifying barriers in an
attempt to facilitate a process to overcome a cumbersome, annual renewal
application process. The goal is to work towards developing a multi-year
data sharing agreement (DSA) between the Florida Department of Health
and the Florida, Agency for Health Care Administration.

The "shifting the burden" and "fixes that backfire" archetypes were
selected, a casual loop developed, role-playing dialogue was constructed
and an action plan developed. Other methods included interviews with
data administrators and attorneys among the two agencies and internal
meetings with stakeholders.

The short term benefits include, an interagency application being
developed, and a January 2008 meeting scheduled with the new AHCA
leadership to propose a DSA. As a result of this project, FDOH senior
leadership is now cognizant of the situation and intends to pursue this
idea. The EPHLI has improved my knowledge and abilities to strategize
and frame the discussions for FDOH with AHCA for enabling a continuing
this dialogue into 2008. In addition, this project has improved my
negotiation approaches and skills For collaborating with other agencies.
Long term, these AHCA negotiations may prove to have long lasting
benefits to the Division of Environmental Health as well as other
Divisions within the Florida Department of Health.

A policy determination has yet to be made of why a DSA can not be
developed, however the recent change of leadership at AHCA may prove to
be an opportunity for securing a DSA. Also, the National Association of
Health Data Organization had developed a national-level work group to
develop a uniform DSA that can be used by all states. Florida has been
participating in these efforts, which may prove beneficial not only to
Florida, but at the national level.

# 

# INTRODUCTION/BACKGROUND:

Hospital data plays an important role in public health surveillance. In
Florida, hospitals and medical care facilities are required by Florida
Statutes to report patient health data to the Agency for Health Care
Administration. Throughout time, the Florida Department of Health
(FDOH), Office of Planning, Evaluation, Data Analysis and Statistics
(Vital Stats) has been the primary users of AHCA data to cross verify
vital birth and death records. AHCA provides non-confidential health
data to the Office of Vital Stats on an annual basis.

Besides using hospital data for tracking and producing vital statistics
reports, there are many other important uses for the data, including
public health surveillance. Currently, FDOH is being funded by CDC to
help develop an environmental public health tracking network (EPHTN).
One of the primary goals of EPHTN project is to link selected hospital
health data with data on environmental hazards, to help identify
patterns and trends of chronic diseases in the population. For example,
linking asthma hospitalization data with outdoor air pollution data to
identify if there are certain times of the year when there is an
increase in rates.

Obtaining confidential hospital data on an on-going, un-interrupted,
electronic basis is crucial for the project to succeed. Confidential
data differs from non-confidential data by the variable contained in the
dataset. The confidential hospital data needed for the project includes
obtaining these selected identifiers within the data, such as social
security number and zip codes. The Office of Vital Statistics does not
get this detailed (low-level resolution) therefore; they receive a
non-confidential, public-use CD, in a time efficient, non rigorous
manner.

AHCA has an annual renewal application process for confidential
information that has been both cumbersome and time consuming to
complete. As a "sister" agency, FDOH is still required to complete many
application forms, obtain multiple signatures, and proceed through a
lengthy, often time-delayed process of obtaining recurring data.

A request for confidential information to AHCA, from any state agency,
Division or Bureau within government, requires the applicant to complete
a formal application, and a hierarchy of upper management signatures
from both Agencies. Despite the importance of obtaining data from AHCA,
there has never been an "official" agreement between the two agencies
that would allow Division's, Bureau's at FDOH to obtain confidential
data in an easy manner.

According to sources within FDOH, the Department has been actively
pursuing a health data sharing agreement (DSA) from the Agency for
Health Care Administration for a number of years. However, a DSA has
never transpired.

The primary stakeholders of this project are those epidemiologists with
FDOH, and 16 other state and city health departments federally funded
for the Environmental Public Health Tracking grant. As mentioned, the
primary focus of the grant is to integrate data from health and
environmental agencies to evaluate adverse chronic disease outcomes,
such as cancers and birth defects. Other stakeholders include other
state health departments, county health departments (CHD's), Agencies
for Health Care, Department's of Environmental Protection (DEP's),
Federal agencies (i.e, US EPA, ATSDR), not-for-profit agencies and
professional organizations. The Tracking states must partner with
stakeholders, with the goal of bringing health and environmental data
sets together for the purposes of exploring potential health risk
relationships.

The majority of state health and environmental agencies collect data as
a regulatory means. Health agencies collect health data for billing
purposes, and environmental agencies collect data to assure compliance
of air, water, sewage, etc.., Both, health and environmental agencies
are typically stove-piped with data, and rarely do the two meet; state
health agencies would benefit by having hospital data that could be
"linked" with environmental hazard data to analyze and determine trends
of health outcomes (i.e., asthma, myocardial heart infarctions and birth
defects) in the population-at-risk.

Health and environmental data will continue to be stored and under
utilized for the purposes of research or public health surveillance. It
is unknown at this point if either the environmental or health agencies
perceive change. Some agencies, for example, the US EPA, are making a
paradigm shift for sharing their data for accountability, others may
potentially follow suit.

####### ***Problem Statement:*** 

*In Florida, the Agency for Health Care Administration (AHCA) requires
the Florida Dept. of Health (FDOH) to proceed through a lengthy and time
consuming application process to receive health data. As a "sister"
governmental agency, bound by similar health care protection laws and
regulations as AHCA, FDOH receives no special consideration or expedited
review in the data request process. This process presents concerns for
surveillance purposes. This process appears to be similar at the
national level, and needs to be streamlined, so that health data can be
more easily retrieved by state (environmental) health departments*.

####### ***Behavior Over Time Graph:***

####### ![](media/image2.jpeg){width="5.4in" height="3.675in"} 

####### ***Causal Loop Diagrams and applicable archetypes:*** 

####### 

####### 

####### ***10 Essential Environmental Health Services:***

This project, "The Quest to Develop a Data Sharing Agreement" fulfills
six (6) of the objectives identified in the Institute of Medicine (IOM)
Report, including Assessment, Policy Development and Assurance
including;

**ASSESSMENT:**

-   Monitor Health: This project is primarily built on the need for
    conducting surveillance using hospital data linked with
    environmental data.

-   Diagnose and Investigate: result of this project will be to use data
    to help better understand the relationship between health and
    environmental hazards

**ASSURANCE:**

-   Evaluate Effectiveness: Having a DSA will enable the Florida EPHTN
    to evaluate and measure progress of intervention and prevention
    efforts

**POLICY DEVELOPMENT:**

-   Inform, Educate and Empower: By using the data from this project,
    will be used to inform stakeholders, communities about how their
    health may be impacted by environmental hazards.

-   Mobilizing Community Partnerships: The end results after formalizing
    a DSA and providing researchers with data needed to produce results
    in a more timely fashion may help to mobilize and engage community
    partnerships, particularly stakeholders to identify environmental
    hazards and the need of environmental interventions.

-   Develop Policies: With a successful project, a data sharing
    agreement may spur a national policy effort for all state health
    care administration agencies to share data with their Department of
    Health.

![](media/image5.png){width="2.7708333333333335in"
height="2.8131944444444446in"}

Figure 1: Picture courtesy of Carl Osaki, MSPH, RS

Department of Environmental & Occupational Health, Northwest Center of
Public Health Practice

University of Washington

####### 

####### ***National Goals Supported*** 

1\. CDC Health Protection Goals

This project supports the primary CDC Health Protection Goal: "Healthy
People in Healthy Places." As a result of implementing the data sharing
agreement, health department's capacity will increase by having data
partners and a more efficient and increased way of conducting
surveillance on a routine basis, promoting the health and safety of
communities.

2\. Healthy People 2010

In addition, this project also meets the following Health People 2010
objectives:

**23-2.** Increase the proportion of Federal, Tribal, State, and local
health agencies that have made information available to the public in
the past year on the leading health indicators, and priority needs.

**23-12.** Increase the proportion of Tribal, State, and local public
health agencies that provide or assure comprehensive epidemiology
services to support essential public health services.

**8-27.** Increase or maintain the number of Territories, Tribes, and
States, and the District of Columbia that monitor diseases or conditions
that can be caused by exposure to environmental hazards.

3\. National Strategy to Revitalize Environmental Public Health Services

This project support four (4)goals outlined to support revitalizing
environmental public health services.

**Goal I**. Build Capacity. Enlighten policy makers and other state
agencies to Environmental Public Health and Data Sharing, and an
opportunity to coordinate and collaborate with policy development.

**Goal II**. Support Research to define Effective Approaches to Enhance
Environmental Public Health Services. Linking research with health and
environmental data.

**Goal III**. Foster Leadership to Enhance Environmental Public Health
Service. Enhance EPH by developing strong working relationships,
specifically, among stakeholders,

**Goal IV**. Communicate and Market. Improve communication, information
and data sharing among health care administration and public health
agencies.

4\. Environmental Health Competency Project: Recommendation for Core
Competencies for Local Environmental Health Practitioners

This project supports two (2) recommendation for Core Competencies for
Local Environmental Health Practitioners.

A2. Data Analysis and Interpretation: The capacities to analyze data,
recognize meaningful test results, interpret results, and present the
results in a meaningful way to different types of audiences. This
project supports data sharing for public health surveillance.

B7 Partnering: The capacity to form partnerships and alliances with
other individuals and organizations in order to enhance performance on
the job. This project recognizes the need for state agencies to share
data and form partnerships so that epidemiologists and other public
health authorities enhance findings.

####### Project Logic Model:

+-----------------+-----------------+----------------+-----------------+
| **Res           | **Activities**  | **Outputs**    | **Short & Long  |
| ources/Inputs** |                 |                | Term Outcomes** |
|                 |                 |                |                 |
|                 |                 |                | **and Impacts** |
+-----------------+-----------------+----------------+-----------------+

# PROJECT OBJECTIVES/DESCRIPTION/DELIVERABLES:

**Program Goal:** To increase inter-agency collaboration between the
FDOH and AHCA, and develop a data sharing agreement (DSA) between FDOH
and AHCA to share (confidential) hospitalization data in a timely and
consistent manner.

**Health Problem:** Increasing rates of chronic diseases and lack of
public health surveillance of adverse health conditions associated with
environmental hazards.

**Outcome Objective:** Develop a data needs assessment group, and
establish a joint DSA agreement between the AHCA and FDOH.

**Determinant:** Hospital data is not being used to full potential - a
lengthy application process to obtain confidential health information
contributes to a gap in proactive public health surveillance.

**Impact Objective:** By 2008, one (1) Division or Bureau within the
FDOH should be obtaining confidential hospitalization data and using it
for public health surveillance purposes.

**Contributing Factors:**

1.  There has never been a coordinated effort from FDOH, Divisions or
    Bureaus to

> obtain confidential hospitalization data from AHCA, except in a
> piece-meal fashion.

2.  Lack of communication between agency, and no clear criteria
    available that would explain why FDOH cannot obtain data, only
    verbal responses.

**Process Objectives:**

> 1\. By 2008, key stakeholders within FDOH will demonstrate awareness
> of complications and need towards receiving confidential information
> from AHCA.

# METHODOLOGY:

####### ***Events and Activities***

> **Event:** Awareness of issue is common knowledge among key
> stakeholders and upper management.
>
> **Activities:**
>
> a\) Internal FDOH meeting held to discuss strategy to move towards
> developing a Data Sharing Agreement.
>
> b\) Obtain an electronic spreadsheet list of all FDOH users of AHCA
> data.
>
> c\) Hold internal FDOH meeting. Appoint liaison, Meade Grigg,
> Director, Office of Planning, Evaluation, Data Analysis and
> Statistics, to take leadership role to discuss a data sharing
> agreement with AHCA.
>
> e\) Meeting scheduled with new leadership at AHCA.

# RESULTS:

At this time, a formal DSA between FDOH and AHCA has not been developed,
however an interagency data application (see attached) was modified to
help ease the data application process. The interagency request for data
is now a less intensive process, however, still requires an annual
renewal. Additionally, a recent change of leadership has prompted
another meeting which may prove to be an opportunity for securing a DSA
in the near future. In addition, communication between the two agencies
has increased, and the stimulation provided by this project has helped
to formulate an internal partnership among selected Division's within
FDOH, and gain momentum to support an effort for a DSA.

# CONCLUSIONS AND NEXT STEPS:

In summary, the system thinking approach using the shifting the burden
and fixes that backfire archetypes, helped to propel this project
towards identifying obstacles to reach resolution. The result of the
work effort of this leadership project helped to stimulate a heightened
interest between agencies of sharing hospital data. Although a forma
data share data on a recurring basis between agencies has not matured,
an interagency data request application was developed. More importantly,
a communication channel has been established, and management is keenly
aware of the need for a more collaborative effort to partner to share
data.

At the National level, this project is supported by the CDC
Environmental Public Health Tracking Branch, National Association Health
Data Organization and several other Health Tracking funded states. The
National Association of Health Data Organization (NAHDO) has been
working to make DSA's between health care agencies and health
departments a reality among states. Currently, NAHDO and CDC are
assisting a national work group effort to develop a uniform DSA that can
be used by at a national level. Florida Department of Health is involved
with this federally funded Environmental Pubic Health Tracking states to
work on this issue at a national level.

Next steps include continuing to participate at the state and national
levels in workgroups and to advocate the need for agencies to develop
DSA's and to share hospital data.

**Application for Inter-Agency Staff Access to Confidential Data**

Name of Applicant
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_Date:\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Phone:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
E-mail: \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Applicant's Organization:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Title of Project:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**Agreement for Inter-Agency Staff Access to Confidential Data**

By signing below, the Applicant agrees not to share the data externally
or internally unless specifically authorized. The Applicant agrees to
use the data only for the purpose stated in this application. The
Applicant agrees to secure the data and any reports containing the data
when not being used, use password protection, and provide for proper
disposal of the data and reports, so that confidentiality will not be
breached. The Applicant acknowledges that failure to abide by the terms
of this agreement may subject the Applicant to penalties for wrongful
disclosure of Protected Health Information under federal law. The
Applicant agrees to ensure that any subcontractors of the Applicant do
agree to the same conditions and restrictions for safeguarding the data.

**Signed:** [\_\_\_\_\_\_]{.underline} \_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Applicant Date

**Approved:** [\_\_\_\_\_\_\_\_\_\_]{.underline}

Applicant's Bureau Chief Date

\_\_\_\_

Applicant's Division Director Date

\_\_\_\_\_

Data Owner's Security Administrator Date

\_\_\_\_\_

Data Owner's Bureau Chief Date

\_\_\_\_\_

Data Owner's Division Director Date

**Data** \_\_\_\_\_

**Released:** Data Owner's Dissemination Administrator Date

*Note: Access authorization must be renewed annually.*

1\. Identify Database(s) Requested:

2\. Purpose of Project and Statutory Authority:

3\. List subcontractor(s) who will receive access to confidential data
and identify the contract manager.

4\. Describe the subset of records requested (time periods, types of
patients, diagnoses and etc.)

5\. List confidential data elements\* requested and provide an
explanation of why each element is necessary for the successful
completion of the project or study.

6\. Describe any linkage to other data files, sources of linked files,
and identifying information contained in the linked files. Will any
identifiable data obtained for this project be used as a basis for any
actions which may affect individuals and/or establishments identified
from the confidential data?

7\. Describe the *least* aggregate data or research results that will be
released internally and/or externally.

8\. Indicate the anticipated project completion date and the duration of
access requested.

9\. Provide (print) name, title, and phone number of persons approving
request on behalf of the applicant.

10\. Applicant's mailing address.

# \*Program must provide applicant with a list of confidential data elements

# 

# LEADERSHIP DEVELOPMENT OPPORTUNITIES:

***Greg Kearney, DrPH, MPH, RS***

Attending the Environmental Public Health Leadership Institute (EPHLI)
has played an important role in helping me to develop important
leadership skills. The systems thinking assignment, readings and
exercises have taught me to understand the dynamics of a problem, and
how to resolve it, by breaking it down into more manageable parts. By
applying the system thinking assignment to a "real world" project, I was
able to clearly identify weaknesses and where to target my efforts
towards obtaining successful results. By completing the Individual
Development plan, I was able to work towards focusing on those areas
that needed attention as identified in the Skillscope self assessment.
By tracking my progress towards these objectives, I was able to reach
several of my personal leadership development goals.

The resources provided by EPHLI, including quality speakers, reading
material, mentoring, coaching, projects and assignments were all top
notch. The face to face meetings throughout the various locations were
filled with valuable information, and the group projects provided for
great opportunities to learn leadership skills and have some fun in the
process. More importantly, I was impressed with the dedication and
commitment by the mentors, staff and others attending the EPHLI
sessions. The networking opportunities provided for a great chance to
meet with other professionals and discuss environmental health issues
from all over the country.

I am very thankful to my mentor and EPLI for providing the time to share
their knowledge, skills and learning experiences with me. I am proud to
have been a part of the EPHLI class of 2008, and look forward to
encouraging others to apply for this great opportunity to improve their
environmental public health leadership skills.

# ABOUT THE EPHLI FELLOW(s)

Greg Kearney has 18 years of professional experience working in
environmental health and epidemiology. Dr. Kearney currently works as an
Environmental Epidemiologist for the Florida Department of Health
(FDOH), Division of Environmental Health and adjunct professor at
Florida Agricultural and Mechanical University (FAMU). Dr. Kearney
serves as the Principal Investigator for the CDC Environmental Public
Health Tracking Network (EPHTN) grant at FDOH, and is primarily
responsible for overseeing the work involving the design and
implementation of a state/national environmental epidemiology public
health surveillance network system.

Dr. Kearney holds a Doctor of Public Health (Dr.P.H.) in Environmental
Health Sciences, from the University of Alabama at Birmingham, a Masters
of Public Health (M.P.H.) from the University of South Florida, and a
Bachelor of Science (B.S.) in Urban and Regional Planning from East
Carolina University. He received his Florida Registered Sanitarian
(R.S.) certification in 1995, National RS certification in 1997. Dr.
Kearney also serves as Chair for the National Environmental Health
Association's, Environmental Public Health Tracking and Informatics'
Technical Committee.

Dr Kearney enjoys collecting and reading books on environmental health
and epidemiology and has a special interest in spatial analysis (using
GIS). He lives in Tallahassee, Florida with his beautiful wife,
Michelle, video-game expert son Patrick, and his two pugs, Bandit and
Mojo. Whether working or playing, each day, he looks forward to living,
learning, laughing, and never wasting a precious moment.

# REFERENCES

1.  Osaki, C., Northwest Center for Public Health Practice, 10 Essential
    Environmental Health Services.

2.  CDC National Strategy to Revitalize Environmental Public Health
    Services.

<http://www.cdc.gov/nceh/ehs/Docs/nationalstrategy2003.pdf>

3\. CDC Health Protection Goals for the 21^st^ Century
<http://www.cdc.gov/about/goals/default.htm>

4\. Healthy People 2010

<http://www.cdc.gov/nchs/about/otheract/hpdata2010/abouthp.htm>

5\. Rowitz, L., Pubic Health Leadership: Putting Principles into
Practice, (2003). Jones and Bartlett Publishing Co.

6\. Environmental Health Competency Project: Recommendation for Core
Competencies for Local Environmental Health Practitioners
<http://www.apha.org/programs/standards/healthcompproject/corenontechnicalcompetencies.htm>