1. Public Health Data Sharing: A New Opportunity for UA Faculty & Staff
UA Center for Population Science and Discovery
UA Office for the Responsible Conduct of Research
UA Center for Biomedical Information & Statistics
December 2016

2. Public Health Data Sharing Agreement
New Memorandum of Understanding between the Arizona Department of Health Services (ADHS) and the University of Arizona (UA) facilitates more collaborative research in public health while improving protection of health data used for research
Broader range of data may be used for research because of better collaboration and improved data protection
The Agreement provides a clearer process for proposing and seeking approval for research projects

3. Public Health Data Sharing Agreement
Using the Agreement additional proposals for new public health research are possible, including collaborative research projects
Data can be shared for projects that have a link to Public Health Practice or projects that involve pure Research. ADHS’s primary objective is to encourage projects with a link to Public Health Practice
Public Health Practice means… “interventions and/or health surveillance designed to enhance the well-being of the specific population… and which have a reasonable expectation of success”.
Research means… “a systematic investigation, including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge.”

4. Public Health Data Sharing Agreement
The Agreement already includes several approved projects. Data for projects currently being shared include:
Vital Statistics
Hospital Discharge and Admissions
Birth Defects
Prehospital Emergency Medical Information (AzPIERS)
Trauma Registry
Immunization Data (ASIIS)
Health Start Data
Clinical Laboratory Reporting

5. Public Health Data Sharing Agreement
Additional data categories that the ADHS possesses may be shared (if approved) by amending the Agreement including:
Behavioral Risk Factor Surveillance
Cancer Registry
High Risk Perinatal Program Data
Infectious Disease Surveillance
Newborn Screening
Data requests for the categories above will require additional time as amendments to the Agreement will need to be completed prior to final project approval*
* Data that cannot be shared includes: “… financial or credit card information, signatures, account numbers, state ID numbers (e.g. drivers license), employee ID numbers, credit report information etc.”

6. Getting Started
Submit your research project to the UA IRB for review and approval
Complete and submit a UA-ADHS Data Sharing Request (including your UA IRB Approval) to the joint ADHS/UA Data Sharing Steering Group
A Request to Proceed template (and examples of completed Requests to Proceed) are posted on the Center for Population Science & Discovery website

7. What’s in a Request to Proceed?
A Request to Proceed is a short document that includes:
A description of the proposed study, including the anticipated Public Health value;
A detailed discussion of the data that is being requested including the data set and specific data elements;
The name of the Principal Investigator and a listing of all the persons involved in the study who will have access to the data;
How often the study will be requesting data from the ADHS (or CB2), and the options for accepting secure data transfer; and
A discussion of the measures your project will have to secure and protect the data from unauthorized use or access by unauthorized persons, and a description of any data encryption measures you will use.

8. Next Step: Steering Group Review
Each project will be reviewed by the joint ADHS/UA “Steering Group” consisting of 2-3 persons each from the ADHS and UA.
In most cases, the Steering Group will designate the UA IRB for primary oversight of the project
In rare cases, the Steering Group may decide to designate the ADHS IRB for primary oversight
Steering Group will work with the UA researcher and ADHS Data Owner to get program consent for the project
Data is transferred from CB2 to the UA researcher after the project has been approved
Research projects that do not include personal identifiers (e.g. HIPPA Limited Data Sets) will receive expedited review/approval

9. Data Security
The UA Center for Biomedical Information & Statistics (CB2) is designated as the Honest Broker for the project data (once approved) and are responsible for ensuring compliance with the data security safeguards including:
Ensuring only authorized personnel have access to the data, including agents or subcontractors;
Ensuring only secure servers and encrypted devices are used;
Prohibiting the use of non-encrypted flash drives, CDs, external drives, smart phones, or other non-networked hard drives;
Asking the research team to demonstrate compliance with data security protocols;
Ensuring compliance with security breach protocols; and
Ensuring data destruction at project termination.

10. Collaboration & Data Use
Joint (UA/ADHS) authorship of publications is encouraged
The UA research team and the ADHS Data Ownership team are expected to collaborate on the project (to the extent practical)
ADHS can review and comment on (but not approve) publication that results from the use of their shared Public Health Data
Follow-up studies using the shared Public Health Data need UA/ADHS Steering Group review and approval

11. Process Summary

12. Data Distribution

13. Steering Group Contacts
The University of Arizona
Katherine Georger: UA Privacy Office
Mariette Marsh: Office for the Responsible Conduct of Research
Will Humble: Center for Population Science & Discovery
Arizona Department of Health Services
Robert Bailey: Bureau of Public Health Statistics
Ken Komatsu: State Epidemiologist