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Big Data Berlin 2019 | Data Research vs Data Privacy: The New Battlefield in our Databases | Leitha Matz | COO at Zuper

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Big Data Berlin 2019 | Data Research vs Data Privacy: The New Battlefield in our Databases | Leitha Matz | COO at Zuper

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About the Author:
Leitha Matz is COO & Co-Founder of Zuper, the first mobile financial coach in Germany and Austria. With 20+ years of building IT and eCommerce teams, she's solved problems for companies ranging from FedEx (international logistics) to FreshDirect (online grocery, $600 MM rev/yr) and is a frequent international speaker on topics ranging from FinTech gamification and financial health to data management, remote work and startup management. Leitha also co-founded "Mind The Gap," a non-profit group promoting women's financial equality, is an EU tech ecosystem connector, and a mentor/judge for startup organisations, including the METRO Accelerators by Techstars.

About the Author:
Leitha Matz is COO & Co-Founder of Zuper, the first mobile financial coach in Germany and Austria. With 20+ years of building IT and eCommerce teams, she's solved problems for companies ranging from FedEx (international logistics) to FreshDirect (online grocery, $600 MM rev/yr) and is a frequent international speaker on topics ranging from FinTech gamification and financial health to data management, remote work and startup management. Leitha also co-founded "Mind The Gap," a non-profit group promoting women's financial equality, is an EU tech ecosystem connector, and a mentor/judge for startup organisations, including the METRO Accelerators by Techstars.

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Big Data Berlin 2019 | Data Research vs Data Privacy: The New Battlefield in our Databases | Leitha Matz | COO at Zuper

  1. 1. Research vs Privacy The new battles in our data
  2. 2. 2 Over $7 Trillion In Health Spending
  3. 3. Your Heart Rate. 3 apple.com
  4. 4. sleepcycle.com Your Sleep.
  5. 5. 5 Your DNA. 23andme.com
  6. 6. Here We Go… 6
  7. 7. Your Commute. 7 Google Maps
  8. 8. Your Spending Habits. 8
  9. 9. Your Workout. 9 strava.com
  10. 10. Actually anonymizing the data is harder than it sounds. 10
  11. 11. “There’s a ton of resources on NYC Taxi and Limousine commission, including a mapping from licence number to driver name, and a way to look up owners of medallions… This anonymisation is so poor that anyone could, with less than two hours work, figure which driver drove every single trip in this entire dataset. It would even be easy to calculate drivers' gross income or infer where they live.” —Vijay Pandurangan, Mitro Founder
  12. 12. Incentives in Opposition. 13
  13. 13. Large, Well-Organised, Open Data Sets 14
  14. 14. Accurate, Secured, Transparent, Minimal 15
  15. 15. “On the one hand, constitutional law protects the personality rights of people; the protection against data misuse is enshrined in the Swiss Federal Constitution. On the other hand, the constitution also guarantees academic freedom. Researchers thus have a right to be held back as little as possible in their work.” — Christian Schwarzenegger, Vice President University of Zurich
  16. 16. The Essential Tension: 17 The more thoroughly you blind the data, the more thoroughly you blind the researcher.
  17. 17. The Right To Be Forgotten 18
  18. 18. 19 The Opportunity To Be Assimilated
  19. 19. Apple’s ResearchKit
  20. 20. https://www.cbinsights.com/research/apple-healthcare-strategy-apps/ Downloaded The App (48,104) Provided Consent & Passed Quiz (16,585) Email Address Verified (14,684) Opted To Share Broadly (9,520) Opted To Share Narrowly (2,681) Opted Not To Share (2,483) Email Not Verified (1,901) Did Not Enroll (31,519) “mPower (a Parkinson’s disease app) saw more than 75% of people participating in the study choose to donate their data, which has allowed it to open-source the data.” Informed Consent
  21. 21. Evaluation needs to be made on the part of the subjects and the research designers • When is it worth taking risks? • We need broader public education about the downsides of data leaks. • Data subjects need to understand potential implications. (Informed Consent) To level the playing field, government also has a role in creating informed legislation • “an aligning and simplification of legal norms to drive research forward efficiently.” Potential Remedies
  22. 22. © Kaspian 2015-2016 Thank You! Leitha Matz @missginsu COO/CoFounder : Zuper GmbH getzuper.com
  23. 23. Apple Is Going After The Healthcare Industry, Starting With Personal Health Data https://www.cbinsights.com/research/apple-healthcare-strategy-apps/ 23andMe’s Pharma Deals Have Been The Plan All Along https://www.wired.com/story/23andme-glaxosmithkline-pharma-deal/ On The Research For Big Data Uses For Public Good Purposes https://journals.openedition.org/netcom/2556 The Conflicts Around Data Protection https://www.news.uzh.ch/en/articles/2018/forschung-datenschutz.html Stealing an AI algorithm and its underlying data is a “high-school level exercise” https://qz.com/786219/stealing-an-ai-algorithm-and-its-underlying-data-is-a-high-school-level-exercise/ Machine Learning Models that Remember Too Much https://arxiv.org/pdf/1709.07886.pdf Toward Reproducibility: Balancing Privacy and Publication https://towardsdatascience.com/toward-reproducibility-balancing-privacy-and-publication-77fee2366eee New York taxi details can be extracted from anonymised data, researchers say https://www.theguardian.com/technology/2014/jun/27/new-york-taxi-details-anonymised-data-researchers-warn GDPR Requirements List in Plain English https://www.varonis.com/blog/gdpr-requirements-list-in-plain-english/ New study to measure impact of sleep tracker data on patient-provider communication https://www.regenstrief.org/article/new-study-measure-impact-sleep-tracker-data-patient-provider-communication/ References:

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