UK citizens voice their views on greater public use of patient health and social care data: “public benefits must outweigh profit”

The National Data Guardian, with support from Sciencewise, has completed a dialogue with more than 100 members of the public exploring how to make sure health and care data is used in ways that benefit people and society. The dialogue report has just been published on as part of the Putting Good Into Practice project, which is co-funded by the National Data Guardian for Health and Social Care, Understanding Patient Data and UK Research and Innovation’s Sciencewise programme.

Overall, the report has found that transparency and authentic public engagement are key factors to consider throughout the whole data life cycle. Public benefit can only be demonstrated if the value of using data is explained to the public itself and this is most effectively achieved by engaging people from a cross-section of society to assess how data is used. Consequently, participants identified five priority areas:

  • Being ambitious for the use of health and social care data in research and innovation
  • Identifiable and sensitive data should be treated with the utmost care
  • The benefits from the use of health and social care data must be fairly distributed
  • Safeguards are needed to protect society from data manipulation
  • Public benefit must outweigh profit

Here are the thoughts and reflections from the participants themselves – Putting Good into Practice project video.

View the dialogue report which was published by the National Data Guardian’s on 14th April.