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Public consultation on the use of confidential patient information

In late 2023 we assisted an application to the Health Research Authority’s Confidentiality Advisory Group (CAG).

We were approached by the UK Colorectal Cancer Intelligence Hub who requested our advice on their application for the use of confidential patient information without consent in the COloRECTal cancer data Repository (also known as CORECT-R). The CAG was satisfied with our discussions (see CAG minutes). However, they requested wider consultation with representative patient and public involvement groups. With our support, the Hub carried out a public consultation:

  • 75 people attended one of four online sessions.
  • The majority supported the intended use of confidential patient information without consent, with only two ‘no’ votes.
  • The sessions identified key areas for ongoing consultation during the lifetime of the project.

The full report is available.