Online discussion about patient data in the NHS

Posted on December 4, 2012 by

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This Thursday, the Guardian is holding a live online discussion about Patient data in the NHS.

Every time you visit an NHS hospital or your GP, information is recorded and stored. This NHS data is a huge resource for research – David Cameron named NHS data one of the UK’s five key strengths in life sciences. The government is taking a number of steps to open up this huge resource safely and securely so researchers can use this data to improve healthcare and develop new treatments while each patients confidentiality is protected.

This includes establishing the Clinical Practice Research Datalink to link up anonymised data from each patients GP and hospital care, making this anonymised data available for approved research projects. The government is also planning to update the NHS constitution so every individual using the NHS knows how their data may be used and their rights to have a say over this.

The Guardian has a good line up taking part on Thursday including Peter Knight who leads on research information and intelligence at the Department of Health and John Parkinson who will be able to shed more light on how the new Clinical Practice Research Datalink will work and the safety measures in place to ensure every individual’s confidentiality is protected:

They will be discussing:

…the issues around patient data and information governance.

  • How should patient data be used?
  • What protocols should be in place for information use?
  • And can we better approach patients with regards to using data for trials?

This conversation will be really interesting as we prepare to comment on the planned update to the NHS Constitution. Hopefully the discussion will touch on how to provide clearer information about how data will be handled; the systems and structures that are being put in place to keep individual’s data safe; and how patients experience the system. It would be interesting to know more about what information patients would like:

  • about the benefits of sharing data for research?
  • about what this will help us find out?
  • do they want to know who will be accessing their anonymised data?
  • do they want to know about the research their data may be used for?
  • do they want to know the findings of the research?
  • how they want this information?
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