Patient Data in Clinical Research

The UKCRC Board Subgroup on Public Awareness aims to raise awareness, change attitudes and encourage behaviour change through better information to the public about the use of, and benefits of using, patient data for research.

The Subgroup brings together a broad range of UKCRC Partners and stakeholders who have met since August 2008 and has made good progress to date. Initial findings have indicated that:

  • The public need clearer information on how patient data are used in research
  • There is a need to look at alternative ways to disseminate information to them other than through the mainstream media

It has therefore been decided that a targeted communications campaign should be developed by the Subgroup to increase public understanding of the use of personal data in research. This consists of a patient information leaflet entitled ‘Your health records save lives’ available in GP surgeries. This collaborative activity will build on, and link in with, other work by the Partners to build awareness about the uses and benefits of patient data in research.

Minutes of the Subgroup’s meetings can be found here.