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Navigating Legal Hurdles in eHealth: The Swedish Data Protection Landscape

This article discusses the challenges of accessing clinical data in the eHealth sector, particularly focusing on the confrontations with the Swedish Data Protection Board. It explores the need for new national legislation that allows for improved access to medical records while ensuring patient privacy. By drawing parallels with internet banking, the article highlights the structural differences in healthcare data and emphasizes the importance of patient-controlled access as a vital aspect of future healthcare services. Key questions regarding patient demographics and service demands are addressed.

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Navigating Legal Hurdles in eHealth: The Swedish Data Protection Landscape

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  1. Overcoming Legal Challenges to eHealthClinical Data AccessConfronting the Swedish Data Protection Board and the road to new national legislation Benny.Eklund@lul.se

  2. Internet banking and Health Care in the same way Benny.Eklund@lul.se

  3. A system that can be considered as analogous to Internet banking, but for health care

  4. Why haven’t such services been rolled out in large scale in the health care? • The average age of patients are significant higher for patients compared with the most active bank customers. • Information about a bank customer’s bank account is much more structured compared to a medical record. • It has not earlier been available secure and cost effective solutions. • Banks are in a better position to charge their customers for those services

  5. Med. Record, Hosp Medical Record, GP Drugs Fees Future Visits Safe “e-mail” to GP Change of GP Transportation Booking transp. Encyclopedia, Drugs Encyclopedia, Med. Patients requests of future functions

  6. Trying to answer questions like • Which groups of patients benefits most? • Which kind of services has the strongest demand? • What kind of technical solutions are most suitable? • What is the best layout and logic is best for the user?

  7. Patient view on Health Care? The medical professional must be a partner instead of someone who make all the decisions

  8. Can patients understand?

  9. Elderly can’t use Internet

  10. Distribution of Age

  11. § The Swedish Data Inspection Board

  12. New legislation in Sweden 1:st July 2008 • Possible to interconnect different EHR:s • Patients has the right to refuse • Patients may block certain parts of the EHR • Patient may directly access EHS via Internet

  13. How many doctors can access your Medical Record? 1999: 2-4 Doctors

  14. How many doctors can access your Medical Record? 2006: 1000 Doctors

  15. How many doctors can access your Medical Record? 2011: 30.000 Doctors

  16. Patient controlled access A coming future!

  17. Four possible statements: Most possible access! I open up myself from home! I’m opening at the GP:s surgery! Keep it as it is!

  18. Why those efforts? • Sooner or later there will be a demand

  19. “People often overestimate what will happen in the next two years and underestimate what will happen in ten.” Bill Gates

  20. Balance Medical Safety vs Privacy

  21. Benny.Eklund@lul.se

  22. Possible set of services: • Book or rebook a visit • Pay a visiting fee • Examine the medical record • Put a question to their GP • Fill out a Health Declaration Form • Print out drug and lab list before an travel abroad • Change GP (when moving or similar) • Update phone number and name of close relative • Mask or block sensitive data • Track the referral

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