1. Workgroup Privacy and Data flow

2. Contents Privacy three types of medical data (definitions) ownership of medical data national database Data Flow passive data collection from medical record active data collection from medical record

3. Three types of medical data the Belgian privacylaw has three types of personal data: non-coded personal data coded personal data: only with a code the person is tracable  intern linking  extern linking  trusted third party coding aggregating

5. Three types of medical data anonymous data  = can not be linked with a person  no intern/extern linking: research limited  are not personal data = no privacy law

6. Ownership of medical data it is not legaly specified who is owner of medical data, three posibilities: patient is owner  “it is about himself”  permission needed bias in research cost? caregiver is owner  “he collect and keep the data”  he can sell the data to everybody  permission needed (idem)

7. Ownership of medical data public is owner of medical data  “data is used to improve healthcare, so it serves everybody”  no permission needed free to use no selection bias  possibel to collect information that is not possible with intervention-research long-term side effects medication health service research (HSR) = basic research in primary health care quality feedback information

8. Ownership of medical data Delphi: opinion about ownership are permission needed?

9. National database Delphi questions can medical data be collected blind in a database, so it can be subjected to a specific research question afterwards? about the database  where? (national, flemish/waloon, regional)  who can/can not be the admin?  is permission needed to perform a research on (a part of) the database to whom? (priv. com, new 'monitoring com.',...) composition of monitoring com. permission needed of ethical com? can commericial institution use database?

10. National database Delphi question (...) about database (...)  under which format can data be collected (coded, non- coded, anonymous)?  if coded: who can be TTP?  other? about anonymisation/coding: rules needed (ex: age class), who has to monitor those rules?  priv. comm./new 'monitoring comm./other?

11. Contents Privacy three types of medical data (definitions) ownership of medical data national database Data Flow passive data collection from medical record active data collection from medical record

12. Data Flow problem in data collection: we need uniformity! users collect data differently, even with same software software vendors do not follow common rules (DPRS) = we be the most challenging problem 2 solutions passive data collection (uniform extraction) active data collection (uniform introduction): carepathway

13. Passive collection: case 1

14. Passive collection: case 2

15. Passive collection: case 3

16. Active collection: CPW