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CSTE South/East Regional NSSP Data Sharing Workshop

Becky Lampkins, Manager, Surveillance/Informatics Program at CSTEMeredith Lichtenstein, CSTEHayleigh McCall, Program Analyst III, Syndromic Surveillance at CSTEAaron Kite-PowellTolu OlumuyiwaDavid AtrubinCaleb Wiedeman, EpidemiologistDeborah GouldCarly Babcock -MDH-Charlie Ishikawa, Principal at Kahuina ConsultingHeather Head, Public Health Analyst at Kahuina ConsultingMarcus Rennick, Consultant at Kahuina ConsultingDjibril CamaraErin AustinArden Norfleet +41 others
From the list: Preparation

✔ Provide answers to legal questions about data sharing on BaseCamp

Charlie I. added this on
Completed by Zach F.
Assigned to
Amy Ising Amy I. Arden Norfleet Arden N. Bukky Okulate Bukky O. Caleb Wiedeman, Epidemiologist Caleb W. Carly Babcock -MDH- Carly B. Danielle Henderson Danielle H. David Atrubin David A. Djibril Camara Djibril C. Emily Hosterman Emily H. Erin Austin Erin A. Eunice Amenu -MDH- Eunice A. Haytham Safi Haytham S. Hieremila Haile Hieremila H. James Muncy James M. Jennifer Stanley -MDH- Jennifer S. Jessica Baker Jessica B. John Prather John P. Jyllisa Mabion Jyllisa M. Karl Soetebier Karl S. Madison Thomas Madison T. Megan Holderness Megan H. Michael Thomas Michael T. MisChele Vickers, Public Health Research Analyst III MisChele V. Rendi Murphree Rendi M. Russell Jones, Epidemiologist, Manager Russell J. Sara Robeson Sara R. Steve Maley Steve M. Talmage Holmes Talmage H. Tolu Olumuyiwa Tolu O. Zach Faigen Zach F.
Due on
Notes
In anticipation of questions and requests regarding the legal-issues with data sharing, please reply to this to-do using the discussion area with answers and references to the following:
  1. Is your inter-jurisdictional sharing permitted or barred under a formal agreement (e.g. a law (e.g. HIPAA) or public health authority) or informal agreement (“handshake”, MOU, information sharing, etc.)?
  2. If 'yes' to #1, please provide copy or hyper-link to the relevant legal agreements (templates), laws, rules, or other (either permissive or preventing)
  3. For your agency, on whose authority can inter-jurisdictional data sharing be granted for…
    1. Health agency to health agency
    2. Health agency to other governmental agency; e.g., public safety

Comments & Events

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Zach Faigen Zach Faigen
NC is allowed to share data with CDC according to our mandate that allows for the collection of the ED data.  I believe legally this is referring to the raw line level data, not sharing aggregate data or reports etc.  Our mandate is attached. 
GS_130A-480_CDC.pdf 8.2 KB • Download
 
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Caleb Wiedeman, Epidemiologist Caleb Wiedeman, Epidemiologist
1. Well... maybe? All potentially relevant documentation is below.

TCA 1200-14-01-.15 "General Measures for the Effective control of Reportable Diseases".
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The TCA for confidentiality is below:
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And our trading partner agreements highlight that the data we receive will be used for "public health business practice".

TDH's general public data release policy is below (although it is currently being revised):
image.png 247 KB • Download

Some of our (informal) trading partner agreements have specific amendments that our partner organizations required and the contents of these varies.

3. Health agency to health agency for public health use cases would be okay  if the public health authority is legally authorized to collect or receive the information for the purpose of preventing or controlling disease, injury, or disability.

Health agency to other government agency would probably require legal review or IRB approval if it involved PHI (any line level information). Otherwise, it would be subject to our public data release guidance.
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David Atrubin David Atrubin
Inter-jurisdictional sharing of de-identified data (e.g., from state to state) is neither expressly permitted or barred in Florida.  For us to routinely share data with other states or municipalities, additional discussion would need to occur within the FDOH.  Here is our MOU (or a part of it) below.  The collection of SyS data in FL falls under epidemiologic investigation.
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David Atrubin David Atrubin
Here is the section of Florida's reportable disease code that, I believe, most closely applies to the sharing of SyS data.  What is clear to me is that the language was written for data that are not SyS in nature.  An update would be beneficial.
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Tolu Olumuyiwa Tolu Olumuyiwa
Is your inter-jurisdictional sharing permitted or barred under a formal agreement (e.g. a law (e.g. HIPAA) or public health authority) or informal agreement (“handshake”, MOU, information sharing, etc.)?
- For our region, sharing is permitted through a charter with the members of the Syndromic Surveillance Consortium of Southeast Texas
SyndromicConsortium_CharterBylaws_v20160601.pdf 239 KB • Download
.
If 'yes' to #1, please provide copy or hyper-link to the relevant legal agreements (templates), laws, rules, or other (either permissive or preventing)
For your agency, on whose authority can inter-jurisdictional data sharing be granted for…
- For health departments in the regional consortium. Health agency to health agency
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