HDLA program overview

About

High school-aged youth routinely share personal and health data through mobile apps, social media, and school platforms often with limited understanding of how that data is collected, stored, and used. Yet existing digital literacy efforts rarely address the specific privacy implications of health-related data, or equip young people to critically evaluate the systems they interact with daily. The Health Data Literacy Ambassadors program was designed to close that gap, giving teens the tools to engage with health data analytics, interrogate how their data moves through systems, and become advocates for data literacy in their own communities

Process

I co-designed and facilitated three data privacy workshops for 20+ high school participants. The workshops covered:

  1. How personal data collection works in the apps and platforms youth actually use

  2. Privacy implications of mobile health applications specifically

  3. Ethical data storytelling - how to visualize and communicate data responsibly

Beyond the workshops, I led the structuring and delivery of a 16-week pilot program, coordinating multiple instructors and serving as the primary liaison for youth participants. I worked on the IRB proposal, detailing data collection, storage, and anonymization procedures to protect participant confidentiality.

To develop the curriculum, I curated and analyzed existing case studies, curricula, and frameworks, adapting them into activities that could engage young learners in complex topics without condescending to them.

Impact

  • 3 workshops delivered to 20+ youth participants

  • 16-week pilot program successfully structured and delivered

  • IRB proposal approved

  • Insights from this work directly informed the direction of my dissertation on age-appropriate AI

Role: Co-Designer, Facilitator

Timeline: Aug 2021 - Dec 2022

Location: University of Illinois Urbana-Champaign

Research Team: Dr. Rachel Magee, Dr. Catherine Blake, Emily Fishkin

Funded by: Illinois 4-H Extension Collaboration Grant

Participants: 20+ high school youth

Methods: Co-design, Workshop Facilitation, Survey, Contextual Inquiry, IRB Protocol Development

Output: 3 data privacy workshops, 16-week pilot program, approved IRB proposal

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Building Youth's Agentive Capacities