Public Health Data Disclosure or Request Readiness Assessment

May 02, 2025 | Chris Alibrandi O’Connor

Organizations that want to share or request data to support public health work should take several preparatory steps. An organization’s data sharing efforts will develop more quickly and smoothly if certain considerations have been analyzed, or actions taken before negotiations begin on a data sharing agreement. The same is true for organizations trying to obtain data to support their public health efforts.

Consider the following prompts and questions before initiating data sharing or a request for data to prepare for a more efficient and effective negotiation for the data’s disclosure. That consideration will identify barriers to data sharing as well as result in greater clarity around organizational data sharing needs and data governance.

For those seeking data, what data do you need?

• What type of public health work is on the table and what data is needed to achieve the related public health goals?
• Identify which entity has the needed data
• Identify the required data elements
• Specify the type of data needed (e.g., line level, identifiable, Limited Data Sets, de-identified, aggregated)
• Having identified the data elements and type of data needed will help later in the legal analysis of which laws apply to the disclosure of data

Pre-Negotiation Considerations

• Review organization’s existing written data sharing or data governance policy. Determine whether the project is covered by it and whether any related data disclosures or uses would comply with it.
• If there is no such policy, consider developing one for adoption. That process will clarify and/or resolve many issues, including data governance guidelines, which could become barriers during data sharing agreement negotiation.
• Having an organizational “champion” in a position of authority to support a data project may help overcome internal obstacles. Identify a champion — or develop one.
• Identify and get to know the people who play key roles in data sharing agreements (data stewards, leadership, legal counsel) to facilitate project communication.

Pre-Negotiations Review of Legal Issues

• Evaluate the answers to these questions about disclosing the data at issue:
• Can I? (i.e., does the law permit the data’s disclosure?)
• Must I? (i.e., does the law require disclosure?)
• Should I? (i.e., is disclosing the data the right call when considering legal, policy, and equitable factors)
• When considering the risks of disclosing data, also consider the risks of not disclosing it for public health purposes; consider what public health efforts will not succeed without the data.

Chris Alibrandi O’Connor, JD is Managing Director of CAOC Consulting, LLC, a legal and management consulting firm.

Funding for this project was made possible (in part) by Grant Number 6 NE11OE000066-01-02, Assistance Listing Number 93.967, from the U.S. Department of Health and Human Services/Centers for Disease Control and Prevention. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services, nor does the mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government.