Personal Data for the Public Good
New Opportunities to Enrich Understanding
of Individual and Population Health
Matthew J....
“Health happens where we live,
learn, work and play.”
An increasingly diverse & expanding ecosystem of devices,
apps, and services generating vast amounts of data…
New
models of
inquiry
Law &
Ethics
Access &
Inclusion
Tending
the
Ecosystem
How can we
use this data
to improve
health
res...
http://hdexplore.calit2.net
http://hdexplore.calit2.net
PHD Ecosystem
Surveys
Individuals
n=465
Researchers
n=134
Interviews
Individuals
Researchers
Companies
Key Informants
Environment
Scan
R...
Would you be willing to share your
personal health data with researchers?
How important is it to you that your
personal health data be kept anonymous?
How useful would personal health
data be for your research?
More UsefulLess Useful
Issue Spotlight: Privacy
• Primary concern, but complex
• Contextual and value-laden
– Depends on what data, with whom, wh...
Other Issues
• Data management
and archiving
• Data harmonization
and interoperability
• Device validation
• “Dirty” data ...
Next step: Building a Network
• $1.9M grant from Robert Wood Johnson
Foundation
• Network of innovators in personal health...
Linda Avey
Co-Founder 23andMe
Hugo Campos
ePatient Advocate
Robert Kaplan
National Institutes of Health
Sendhil Mullainath...
Network Activities
• Initiate agile research projects to demonstrate
transformative potential of personal health
data
• De...
Thank you!
Matthew J. Bietz
University of California, Irvine
mbietz@uci.edu
hdexplore.calit2.net
Special thanks to: Kevin ...
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Personal Data for the Public Good: New opportunities to enrich understanding of individual and population health

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Individuals are tracking a variety of health-related data via a growing number of wearable devices and smartphone apps. More and more data relevant to health are also being captured passively as people communicate with one another on social networks, shop, work, or do any number of activities that leave “digital footprints.” Self-tracking data can provide better measures of everyday behavior and lifestyle and can fill in gaps in more traditional clinical or public health data collection, giving us a more complete picture of health.

We at the Health Data Exploration project are creating a Network of innovators in PHD to catalyze the use of personal data for the public good. This Network will bring together companies, researchers, and strategic partners to strategize, coordinate, and experiment with using PHD to understand health.

Published in: Health & Medicine, Technology
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Personal Data for the Public Good: New opportunities to enrich understanding of individual and population health

  1. 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. 2. “Health happens where we live, learn, work and play.”
  3. 3. An increasingly diverse & expanding ecosystem of devices, apps, and services generating vast amounts of data…
  4. 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. 5. http://hdexplore.calit2.net
  6. 6. http://hdexplore.calit2.net
  7. 7. PHD Ecosystem
  8. 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. 9. Would you be willing to share your personal health data with researchers?
  10. 10. How important is it to you that your personal health data be kept anonymous?
  11. 11. How useful would personal health data be for your research? More UsefulLess Useful
  12. 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. 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. 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. 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. 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. 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.

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