Public attitudes to the use of personal data in research

The public need to have confidence in how their patient records are used for research, and this will require both openness and transparency.Currently, there is little understanding of how patient records are used beyond the direct provision of care.Research has shown that the public are generally supportive of research using health information, but there is little understanding of what this actually means in practice.

Recent reports

The following reports have examined public views on the use of patient data in research:

• Wellcome Trust - Qualitative Research into Public Attitudes to Personal Data and Linking Personal Data [PDF 400KB], July 2013
• Association of Medical Research Charities - Ipsos MORI poll, 2011
  Of 990 people over the age of 15, 80 per cent of participants were definitely or probably happy to be approached about research that would involve allowing a researcher confidential access to their medical records for health research.
  
• New Economics Foundation - Exploring public views on personal electronic health records, October 2010
  
• Royal Academy of Engineering - Young people’s views on the development and use of Electronic Patient Records, 2010
  
• Wellcome Trust - Monitor 1, 2009
  This survey of 1179 UK adults found that 74 per cent were willing to allow access to their medical records for medical research.
  
• Wellcome Trust - Public Attitudes to Research Governance: A qualitative study in a deliberative context, 2007
• Medical Research Council - The Use of Personal Health Information in Medical Research, 2007
• WW Lowrance - Access to Collections of Data and Materials for Health Research, 2006

Trust-funded activities

The Trust has funded a number of initiatives to engage the public in discussions about the use of patient information for research.

For example, a new play aimed at young people - Breathing country - explores issues relating to e-health records:

The New Economics Foundation together with the Centre for Science Education at Sheffield Hallam undertook a mass public engagement exercise on the topic, funded by the Trust