Your data, your decisions


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Can you share your own health data to improve research? How can you participate in the precision medicine revolution. Are there new approaches to brokering your consent to free more data?

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Your data, your decisions

  1. 1. Your Data, Your Decisions Freeing Your Data to Enable Precision Medicine Maninder (Mini) Kahlon, PhD Executive Director, Clinical & Translational Science Institute Assistant Professor, Dept of Neurology, UCSF School of Medicine Mini-Medical School, UCSF, November, 2013.
  2. 2. Data necessary to enable the Precision Medicine vision CC images courtesy of (Clockwise starting from DNA) AndreaLaurel, Nick960, Filter Forge, Filter Forge, Libertas Academica, Andrew Eich (playing doctor), Seeming Lee on Flickr
  3. 3. Who holds your data? Healthcare Research Life CC images courtesy of Carbon NYC (pharma/drugs), Techne (Academia), Octal (pharmacy), Sodanie Chea (fruit), Juhansonin (devices), Michael @ NW Lens (hospital), opacity (insurance) from Flickr
  4. 4. Are the holders of your health data enabling sharing? CC image courtesy renedrivers on Flickr
  5. 5. If not them, can you? • Are you able to? • Do you want to? CC image courtesy of squiggle and Robert Bruce Murray III on Flickr
  6. 6. Can you get your own data so you can choose to share? 1. When you use a service, the service provider keeps your data • Hospitals, fitbit, etc. CC image courtesy Michael @NW Lens (hospital) and Juhansonin (device) on Flickr
  7. 7. Can you get your own data so you can choose to share? 1a. In some cases (like hospitals) you have the right to your own data HIPAA Privacy Rule • Covered: Health plans, health care providers, health exchanges
  8. 8. Can you get your own data so you can choose to share? HIPAA Privacy Rule Except in certain circumstances, individuals have the right to review and obtain a copy of their protected health information in a covered entity’s designated record set.55 The “designated record set” is that group of records maintained by or for a covered entity that is used, in whole or part, to make decisions about individuals, or that is a provider’s medical and billing records about individuals or a health plan’s enrollment, payment, claims adjudication, and case or medical management record systems.
  9. 9. Can you get your own data so you can choose to share? But practically speaking, HIPAA may not get you what you need • Currently hard to obtain your records • At least somewhat because EHRs are still being adopted.
  10. 10. Can you get your own data so you can choose to share? Bleeding-edge technology that empowers individuals…..
  11. 11. Can you get your own data so you can choose to share? 1b. Although in some cases you have the right to your data from service providers, in other cases you do not. A. Non-traditional sources of health related data (like groceries for eating patterns, gym records, etc) B. New consumer health devices (like fitbit, but also like medication reminders and others that come close to PHI)
  12. 12. Can you get your own data so you can choose to share? 2. For clinical research you specifically provide data and give consent for it to be used by others. • Can you get your own data back? Very hard. • When you consent, you usually do it for just one group – so doesn’t promote the broader purpose.
  13. 13. Can you get your own data so you can choose to share? And, this is what you have to go through to consent ….
  14. 14. Can you get your own data so you can choose to share?
  15. 15. • Are you able to free your own data? CC image courtesy David Delaney on Flickr
  16. 16. • Do you want to share your data? Some framing thoughts 1. Current environment 2. Privacy & democracy
  17. 17. Environmental Context Who’s using your data in any case? CC image courtesy What What on Flickr
  18. 18. Environmental Context What have we learned about public perceptions? • E.g. Engage UC projects early results show nuanced approach to sharing data in biobanks • IOM-sponsored survey on Health Research & Privacy (2007) suggests 50% of public are concerned about providing their data to health researchers even if anonymized! • (etc) Skepticism remains…. • But, some suggestion that privacy attitudes differ from privacyrelated behavior.
  19. 19. Privacy & Democracy The balance of privacy versus public good, and the role of privacy in a democracy are fascinating topics that can inform your decision. Some interesting reading: “Privacy in an age of publicity” Jill Lepore, The New Yorker June 24, 2013 “The real privacy problem” Evgeny Morozov, MIT Technology Review, Oct 22, 2013 CC image courtesy Mary Hodder (Crimes), Iron Man Records (Assange) on Flickr
  20. 20. Some Radical Ideas How can we give ourselves more useful options to choose • whether we want to share • what we want to share and • how we want to share our own data
  21. 21. Some Radical Ideas – Open Consent Do it once, do it thoroughly, then give it away.
  22. 22. Some Radical Ideas – Open Consent
  23. 23. Some Radical Ideas – Open Consent
  24. 24. Some Radical Ideas – Open Consent Learn more:
  25. 25. Some Radical Ideas – Granular Permissions Give it away, but as you want to, when you want to, at the detail you want to
  26. 26. Some Radical Ideas – Granular Permissions
  27. 27. Some Radical Ideas – Granular Permissions
  28. 28. Some Radical Ideas – Granular Permissions
  29. 29. In Conclusion 1. Diverse data that is collected from a variety of sources is necessary to realize the precision medicine vision. 2. Today, data about you and your health cannot be shared easily even if you wanted to! – – Some data are being collected through consumer devices that are not governed by HIPAA – 3. Some data covered by HIPAA is yours for the asking, but is hard to get and reuse Other data you provide through explicit consent, but consent is hard to understand and limited in use. Recent efforts are trying to re-invent the approach to free-ing your data so it can be used to support research in a manner with which you are comfortable.
  30. 30. Q. What do you think? Acknowledgements: • John Wilbanks, Sage Bionetworks & Portable Consent • Sharon Terry @ Genetic Alliance and Robert Sheldon @ Privacy Access for Reg4All and TrialsFinder • Raj Patel for guidance on the role of privacy in a democracy