CSTE IRB Workgroup

Data Use Agreements (DUAs)

Good morning, 

Does your IRB require an executed DUA for IRB approval for a study that required health department data? For us, this approach would mean providing conditional approval and then  waiting weeks to months before providing final approval, during which lawyers from the state and  the data requestor's organization  go back and forth etc, and then writing a final approval letter. I prefer not to have so many protocols in a holding pattern.   

Thanks in advance for responses.    

Comments & Events

Jessica Robbins
Our process is that the IRB approves the study and then the investigator is responsible for getting the DLA completed. Our Law Department prefers to have the IRB approval completed before they do their thing.

Jessica

Jessica M. Robbins, Ph.D.

Public Health Epidemiologist
PDPH / AHS
500 South Broad Street, Philadelphia, PA 19146
jessica.robbins@phila.gov

IRB Administrator
Philadelphia Department of Public Health
1900 North 20th Street, Philadelphia, PA 19121
(215) 685-0869 / Fax (215) 685-0867
<https://www.phila.gov/services/mental-physical-health/medical-professionals/submit-a-research-study-to-the-institutional-review-board-irb/>http://www.phila.gov/health/irb

pronouns: she/her/hers

All data contained on this system is owned by the City of Philadelphia and it may be monitored, intercepted, recorded, read, copied, or captured in any manner or disclosed in any manner by authorized persons. There is no right of privacy on this system.

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Ian Horste
Hi Craig,

Our IRB verifies a data use agreement is being drafted at the time of review, but our legal/compliance staff won't fully execute an agreement unless the IRB has approved or granted an exemption for the research. Rather than make approval conditional, it is not uncommon for us to affirm in our communications some of the language from the protocol that indicates a data use agreement will be a component of the data protections for the research. That is to say, we often include a statement like: "Data must not be used or disclosed for this research without a fully executed data use agreement," in the determination notices we issue.

Best,
-Ian
Craig Conover, Medical advisor, Chicago DPH, IRB Chair IL DPH
Thanks. Do you include a statement in your letter that IRB approval is not the only requirement for data release and other necessary steps (eg DUA execution) must also take place? 
Pam Isom
Good Morning.   We have worked this into part the the IRB process.  When the project is reviewed and a determination made the Data Use Agreement (which has already been prepared by IRB staff) is sent for our Department's review, which takes about a week.   The DUA is sent to the PI so they may obtain the institutional signature and PI's signature.  The PI returns to our department and the final signatures are obtained.   The data the PI's has requested is entered into the data request system (by the IRB staff).  The data request is sent to the data steward over the data set.  The data is prepared by the data steward and sent to the PI. 

This sounds like a lot of time; however, it has added 2-3 weeks to the overall time-frame.   The DUA used has been standardized and reviewed by our legal team.  As the IRB administrator I do have some additional work; however, this has ensured that no data is released until all agreements are complete and allows for one comprehensive package.  The PI's like it because there is only one contact person to deal with.   
Jessica Robbins
Yes. That's part of our template:

IRB approval of the study does not obligate any City agency or department to participate in the study, or to carry out any specific activities. Participation in all research activities is at the discretion of unit managers.

Approval by the IRB does not, in and of itself, constitute approval for the implementation of this research. Other City approvals may be required before study activities are initiated. Research undertaken in conjunction with individuals or entities external to the City will typically require a data license agreement or other contractual arrangement. If any of these approvals require changes to the IRB-approved protocol, recruitment materials, or informed consent/assent document(s), the changes must be submitted to and approved by the IRB prior to beginning the research study. Principal investigators are responsible for assuring receipt of all required approvals.

We cribbed some of that from somebody else, maybe Penn.

Jessica

Jessica M. Robbins, Ph.D.

Public Health Epidemiologist
PDPH / AHS
500 South Broad Street, Philadelphia, PA 19146
jessica.robbins@phila.gov

IRB Administrator
Philadelphia Department of Public Health
1900 North 20th Street, Philadelphia, PA 19121
(215) 685-0869 / Fax (215) 685-0867
<https://www.phila.gov/services/mental-physical-health/medical-professionals/submit-a-research-study-to-the-institutional-review-board-irb/>http://www.phila.gov/health/irb

pronouns: she/her/hers

All data contained on this system is owned by the City of Philadelphia and it may be monitored, intercepted, recorded, read, copied, or captured in any manner or disclosed in any manner by authorized persons. There is no right of privacy on this system.

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Janice Hicks
At the Virginia Department of Health our IRB is required to review and approve a project before a DUA is completed. The investigator is responsible for obtaining the DUA.

Janice Hicks, PhD
IRB Coordinator
Alysia Kwon, Vice Chair and Administrator
Our IRB approves a study conditionally upon receiving the DUA.  The DUA is drafted and executed in parallel to IRB review/approval. The investigator is responsible for obtaining the DUA.
Navina Forsythe
This became a catch-22 for our IRB because the programs wanted IRB approval before finalizing the DUA and the IRB wanted the DUA. To fix these we created the attached form where the program could indicate that they were aware of the study and had reviewed for the key items that the IRB cares about. Either this form or the DUA are required with the IRB submission.
Pam Isom
So TN is the only one that includes the DUA completion as part of the IRB process.  The Approval Determination letter is held until the DUA is complete.  It sounds like the others require the DUA; however, it becomes the PI's responsibility.  
Navina Forsythe
Well, for Utah I wouldn't say it is solely the PI responsibility. The programs will not release data until both IRB and DUA are complete. Both must be done. The DUA assesses different statutory regulations regarding what data can be released to what entities for what purposes. The IRB looks at the human subjects research issues in 45 CFR 46. The programs (data stewards) are responsible for ensuring both assessments and processes are complete and we have tracking mechanisms for both.
Evaren Page, Director of Science and IRB, Oklahoma State Department of Health
In Oklahoma, we have a separate committee that handles the DUA review and approval process. The DUA application won’t be approved until IRB approval has been given and the program area won’t release the data until the DUA has been fully executed.

Evaren Page, MPH | Director of Science and Institutional Review Board (IRB)
Center for Health Statistics | Oklahoma State Department of Health
p. 405-426-8022 | f. 405-271-9061
Oklahoma.gov<https://oklahoma.gov/> | health.ok.gov<http://omes.ok.gov/>

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