Designing Operable Privacy Standards for Data Sharing during Public Health Emergencies: Workshop Proceedings

Author(s): Third Plateau Social Impact Strategies

Release Date: May 15, 2023 | Last Updated Date: January 31, 2023

Executive Summary

On October 13th and 14th, 2022, the California Council on Science and Technology (CCST) welcomed 26 public health and data privacy experts to a virtual workshop on Designing Operable Privacy Standards for Data Sharing during Public Health Emergencies. Participants were asked to reflect on the challenges and risks associated with collecting, sharing, and/or accessing health data and to conceptualize possible policy solutions to known barriers.

Participants reflected on four use cases that were developed by CCST’s COVID-19 Steering Committee in consultation with relevant stakeholders. These four use cases exemplified scenarios where privacy protections may inadvertently limit the capacity for effective public health interventions. These use cases served as a heuristic to explore common barriers and challenges. Six themes emerged from these discussions:

1. Data collection practices are inefficient and inconsistent.
2. Data collection and reporting technology and infrastructure are outdated.
3. Data systems were not designed with public health in mind.
4. Data policies are inconsistently interpreted and applied.
5. Privacy remains a concern.
6. Community voice should be centered in solutions.

Participants deliberated over potential solutions to these barriers, and proposed the following:

1. Bring impacted communities to the table.
2. Extend privacy legislation to all health-related data collection, including entities not subject to HIPAA.
3. Invest in workforce development to build fieldwide capacity to collect, manage, and utilize data.
4. Modernize privacy laws to account for current realities.
5. Standardize systems and increase interoperability.
6. Build a universally accessible and interoperable data sharing system.
* More details on the proposed solutions are included within (pages 14 – 17).

These workshop proceedings serve as an archive of the discussions. As such, the recommendations, summaries, and statements within have been validated by workshop participants, including CCST’s COVID-19 Steering Committee, but have otherwise not been formally peer-reviewed, nor expanded upon.