Call for Experts: Designing Privacy Standards to Enable Data Sharing during Public Health Emergencies

August 18, 2022 | ,   | Contact: Brie Lindsey

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SACRAMENTO, Calif. — The California Council on Science and Technology (CCST) is seeking nominations for experts from across the public and private health sectors, as well as academia, who would be interested in participating in an interactive virtual workshop on overcoming the challenges to data sharing presented by stringent privacy standards. Participants will explore solutions for ensuring health data are reliable, secure, and informative at all levels of the public health system.

The workshop will be held virtually during the mornings of October 13th and 14th (8:00am -12:00pm PDT).

Please use this form to nominate yourself or someone you think would be interested in participating in this workshop. We will be seeking to achieve a balance of diverse perspectives and interdisciplinary expertise at this workshop and may not be able to accommodate all who are interested in attending.

If you are nominating yourself or someone from your network, we encourage you to include relevant background information in the designated section to help inform our decision.

This project was developed by CCST’s COVID-19 Steering Committee as part of CCST’s COVID-19 Workstream. Experts who participate in this convening will be expected to participate both days of the workshop, review and read pre-convening materials, and review outputs that emerge from the convening.

We also welcome additional thoughts for inclusion in the scope of the convening. Please fill out the nomination form by COB Wednesday, August 31st. Reach out to CCST Senior Program Officer Puneet Bhullar at [email protected] if you have any questions.

Submit Nomination

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Workshop Goals:

The overarching goal for this workshop is to develop guidelines regarding when personally identifiable information is and is not necessary to guide an effective public health response.

This goal will be supported by 4 objectives:

  1. Identify key use cases for data collection and document the necessary workflows;
  2. Use these use cases to explore which circumstances do and do not require identifiability;
  3. Develop accessible guidelines for which data can be shared with whom and under what circumstances; and
  4. Define (or make recommendations regarding) a level of re-identification risk that is acceptable under various circumstances.

Participants will help CCST produce actionable recommendations for California’s policymakers.

Examples of expertise sought:

  • Medical ethics
  • Health equity
  • HIPAA law
  • Health policy
  • Data architecture
  • Health informatics
  • Community health
  • Epidemiology

Ideal candidates for this convening would have deep expertise in their fields as well as experience and interest in connecting their work more broadly. Self-nominations are welcome.

CCST COVID-19 Steering Committee:

Michael Kleeman (Chair), UC San Diego; Red Cross
Sergio Aguilar-Gaxiola, UC Davis
Jesús G. Alvelo-Maurosa, National Science Foundation
Arleen Brown, UC Los Angeles
Richard Carpiano, UC Riverside
Michael Kurilla, National Center for Advancing Translational Sciences, NIH

 

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About the California Council on Science and Technology
The California Council on Science and Technology is a nonpartisan, nonprofit organization established via the California State Legislature — making California’s policies stronger with science and technology since 1988. We engage leading experts in science and technology to advise State policymakers — ensuring that California policy is strengthened and informed by scientific knowledge, research, and innovation.

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