The document discusses the use of personal health data to enhance understanding of health at individual and population levels, addressing challenges related to privacy, data management, and ethics. It outlines a project funded by a $1.9 million grant aimed at creating a network of innovators to promote the use of personal data for public good. The initiative involves researchers, companies, and various stakeholders to develop best practices and engage in agile research projects.

1. Personal Data for the Public Good
New Opportunities to Enrich Understanding
of Individual and Population Health
Matthew J. Bietz
Assistant Project Scientist
Department of Informatics
University of California, Irvine

2. “Health happens where we live,
learn, work and play.”

3. An increasingly diverse & expanding ecosystem of devices,
apps, and services generating vast amounts of data…

4. New
models of
inquiry
Law &
Ethics
Access &
Inclusion
Tending
the
Ecosystem
How can we
use this data
to improve
health
research and
promote the
public good?

5. http://hdexplore.calit2.net

6. http://hdexplore.calit2.net

7. PHD Ecosystem

8. Surveys
Individuals
n=465
Researchers
n=134
Interviews
Individuals
Researchers
Companies
Key Informants
Environment
Scan
Reports &
Literature
Data Use
Agreements
Tools & Tech
Research Methods Used

9. Would you be willing to share your
personal health data with researchers?

10. How important is it to you that your
personal health data be kept anonymous?

11. How useful would personal health
data be for your research?
More UsefulLess Useful

12. Issue Spotlight: Privacy
• Primary concern, but complex
• Contextual and value-laden
– Depends on what data, with whom, why, and for how
long
• Multiple concerns
– Personal relationships
– Protection from discrimination
– Property rights and compensation
• Privacy paradox
• No clear expectations for this data

13. Other Issues
• Data management
and archiving
• Data harmonization
and interoperability
• Device validation
• “Dirty” data – noise,
bias, completeness
• Big Data analysis
• Data transfer
agreements
• Licensing and reuse
• Informed consent and
the IRB
• Anonymization
techniques
• Etc….

14. Next step: Building a Network
• $1.9M grant from Robert Wood Johnson
Foundation
• Network of innovators in personal health data
to catalyze the use of personal data for the
public good
– Companies, researchers, and strategic partners

15. Linda Avey
Co-Founder 23andMe
Hugo Campos
ePatient Advocate
Robert Kaplan
National Institutes of Health
Sendhil Mullainathan
Harvard University
Tim O’Reilly
O’Reilly Media
Larry Smarr
Calit2
Martha Wofford
Aetna CarePass
Gary Wolf
Quantified Self
Advisory Board Members

16. Network Activities
• Initiate agile research projects to demonstrate
transformative potential of personal health
data
• Develop policies, best practices, and resources
• Foster relationships across sectors
Learn more and express interest:
http://hdexplore.calit2.net

17. Thank you!
Matthew J. Bietz
University of California, Irvine
mbietz@uci.edu
hdexplore.calit2.net
Special thanks to: Kevin Patrick, Jerry
Sheehan, Scout Calvert, Judith
Gregory, Mike Claffey, Alexandra
Hubenko, Stephen Downs, Lori
Melichar, Tiffany Fox, Jemma
Weymouth, members of our advisory
board, and all the participants in our
studies.