Public sector personal data sharing: framework and principles

Footnotes

1 https://data.gov.uk/

2 https://statistics.gov.scot/home

3 https://www.ons.gov.uk/methodology/geography/geographicalproducts/opengeography

4 https://gdpr-info.eu/art-5-gdpr/

5 https://www.dst.dk/en/TilSalg/Forskningsservice

6 https://www.census.gov/about/adrm/fsrdc/locations.html

7 https://www.ukbiobank.ac.uk/

8 The Royal Free NHS Foundation Trust were found to have failed to comply with data protection laws by the ICO when they shared around 1.6 million patient details with Google DeepMind as part of a project to develop a diagnosis and detection system for acute kidney injury. The investigation found that patients had not been adequately informed that their data would be used in such a way. For more information on the inquiry and the resulting actions (Hern 2017)

9 NHS England's care.data programme aimed to create a national database of patient's medical records in England. This would have enabled doctors to access patient details from wherever they were being treated and scope for new research that used anonymized datasets of records from across primary and secondary care settings. However, the project failed to win support from the public or doctors and was ultimately scrapped.

10 One example of these intermediaries is MyDex (https://mydex.org).