The results show a widening gap between what organisations want to do with data and what their customers think is appropriate. Much more needs to be done to engage with the public about their data.
A recent nationwide survey of 6,000 people by the New Economics Foundation (2) on behalf of the Wellcome Trust showed that 57 per cent of adults and 67 per cent of young people were enthusiastic about the potential benefits to treatment and health care of digital patient records. However, the overwhelming majority of both groups believes that patients should be able to choose whether or not they are included in any digital database containing personal health data.
62 per cent of people agreed or strongly agreed that organisations should share only information that has been anonymised.
Almost all of those surveyed felt that patients should have access to their own records, but only 35 per cent of adults and 36 per cent of young people were in support of online home access. Only 11 per cent and 13 per cent backed allowing patients to add additional information to their records.
The survey also found 'very significant opposition' to sharing identifiable data for research without patient consent.
- Ipsos MORI (2012). Report. Understanding Society: Evolving public services, evolving public opinion
- New Economic Foundation (2010). Report. Who sees what: Exploring public views on personal electronic health records