Data anonymisation and data privacy for clinical trial data

Project Details

Lead Supervisor: Prof. Mark Elliot (University of Manchester)
Contact Email:
Partners: University of Manchester
External Partners: Roche

Start Date: October 2018

Clinical trials are run by pharmaceutical companies (and elsewhere) in order to test the efficacy of new drugs and/or treatment regimes. Sharing such data for research use by third parties is regarded as good scientific practice as it allows meta-analysis, replication studies and so forth. It also promotes transparency; and indeed pharmaceutical companies are now required to share outputs with the European Medicines Agency who in turn publish them.  However, such sharing carries with it risk to privacy; to date these risks are not well understood.

The proposed project would develop new methods to understand the privacy risks associated with participation in clinical trials.  Some research questions that might be tackled in the scope of the project are:

  • Is it possible to electively anonymise the textual data that appears in clinical study reports?
  • What external data might be used to link to clinical trials data in order to identify a person with those data?
  • Can we develop quantified measures of disclosure risk associated with complex data forms such as clinical study reports?
  • Does the publication of aggregate statistics from clinical trials data represent any privacy risks?

These are just some examples – the successful student would be able to develop the research programme within the scope of the broad topic area.

Reference number MN24

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