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Power to the Patient


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Slides of the Talk Fabian Zimmer & I gave on the SIGINT 12 in Cologne. A video of the talk can be found here:

Published in: Health & Medicine
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Power to the Patient

  1. 1. Power to the Patient
  2. 2. Traditional Data in Medicine• 1733: Measurement of Blood Pressure• 1895: X-rays• 1960ies: Complete blood count
  3. 3. Traditional Data in Medicine• 1962: First Glucose Meter• 1970ies: X-ray computed tomography• 1973: First MRI- images
  4. 4. Genetic Data in Medicine• 1970ies: First genetic tests (phenylketonuria, Tay-Sachs, sickle cell anemia)• 1994: Genetic test for BRCA breast cancer mutations• 2011+: Large scale sequencing hits market
  5. 5. Genetic Data in Medicine
  6. 6. Data & Medicine
  7. 7. Data & Medicine
  8. 8. Brave New Data World?
  9. 9. Who owns the data?Who may access it?
  10. 10. Testing without professional counseling?Direct-to-consumer genetic testing:empowering or endangering the public? –Berman Institute of Bioethics
  11. 11. Who may access the data?
  12. 12. Close Access?• Physicians lack access to older data • Time series can be useful • doubling examinations may be unhealthy & costly
  13. 13. Close Access?• Patients get are forced into a passive role• Experience & knowledge of patients doesn’t get used• Patient groups currently don’t serve as knowledge aggregators
  14. 14. Between the extremesClosed Open ? ( (
  15. 15. Let patients decide!• Personal Health Record? (PHR) • store lab results, fam. history, medical imaging results, data about allergies, immunization status, sequence information, (self reported data?)
  16. 16. Difference to Electronic Health Records• EHRs don’t give patients any control over who is allowed to see the data• Are mainly used for communicating between insurance companies and healthcare providers
  17. 17. Things PHRs could offer:• A permission system for the data in the PHR• APIs to connect to Electronic Health Records (EHR) of doctors/insurance companies• Allow patients to add self-collected data (glucose meter,…)
  18. 18. Benefits of PHR-style sharing• Patients retain control of who gets access to data• Sharing can give doctors better anamnesis, allowing better diagnosis & treatment• Hopefully more people are willing to share their data for science™
  19. 19. A long way…
  20. 20. Problems with PHR• Could lead to excessive demands for patients: • How to decide whom to give which data? • Do I want to keep track of all this data and think about it?
  21. 21. Problems with PHR• Practical issues: • Where to store the data? • Central storage is problematic but not everyone wants to set up his own PHR • Who will be liable in case of data loss/ security breaches?
  22. 22. Examples• Use in… • …research • …clinical setting • …patient-groups/self-help
  23. 23. Research
  24. 24. Research & Clinic
  25. 25. Clinical useWunderlich Project Predictive models for MRSA
  26. 26. Patient-groups & Self- help Anyway. In conclusion: My doctor gave me some bad news, I decided I didn’t believe him, I lost a tonne of weight and I feel awesome. Data saved my life. This siloed data approach is only getting worse until someone dies because no one was able to get access to their health information and it was patently, obviously there.
  27. 27. “If biomedical science remains an “us and them”proposition, it bodes well neither for us nor for them. – Misha Angrist• Patients, physicians & scientists can benefit from a policy-change• We need the option to share data with 3rd parties
  28. 28. Thanks for listening