Open Rights Group: Digital Health Surveillance

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CASE STUDY

Open Rights Group: Digital Health Surveillance

Open Rights Group is a digital campaigning organisation based in the UK focused on protecting privacy and free speech rights online. They conduct public campaigns, media commentary, legal actions, policy interventions and tech projects to challenge threats to these digital rights.

In July 2022, The UK government published the original Data Protection and Digital Information Bill (withdrawn in March 2023). The Bill sought to reform UK data protection law post-Brexit by, among other things, increasing the benefits from data-driven scientific research.

However, concerns were raised that the significant changes under the Bill would undermine data rights and do little to improve the availability of data for genuine research purposes. This included changes to the role of the Information Commissioner’s Office (ICO).

Open Rights Group approached AWO to produce a report on the ICO’s regulatory oversight of health surveillance measures during the Covid-19 pandemic and the potential impact of the Data Protection and Digital Information Bill.

AWO’s report focused on three areas:

  • Case studies examining the digital health surveillance measures implemented during the Covid-19 pandemic, including the NHS Test and Trace programme, the NHS Contact Tracing app and the NHS Datastore. This covered key data protection issues as well as the ICO’s response to each measure.
  • A comparative analysis of the ICO’s approach during the pandemic with the approaches undertaken by data protection agencies from France and Norway and the UK’s Competition and Markets Authority and the Investigatory Powers Commissioner’s Office.
  • An analysis of the DPDI Bill connecting to the data protection concerns raised by the health surveillance case studies.