Despite their openness to social networking, the Facebook generation have real concerns about the privacy of their medical records, according to a new report from The Royal Academy of Engineering. The Academy today publishes the findings from a two year-long research programme exploring young people’s attitudes to privacy, security, their personal information and the potential uses and possible abuses of Electronic Patient Records (EPRs).
The research – which used a specially written play to stimulate debate – shows that while 14-19 year olds are comfortable with today’s culture of publishing personal information on social networking sites, they do have concerns over their details falling into the ‘wrong hands’. Facebook was not deemed to be an invasion of privacy because the young people felt in control of what information was posted and who could get access to that information. In contrast, young people have significant concerns regarding EPRs: the robustness (or not) of the technology; the potential errors that could be made by the users; as well as the possible misuse of the data resulting in prejudice and discrimination.
The majority of the young people surveyed are not fundamentally against the idea of anonymised data from EPRs being used for medical research for the benefit of society. But this view is inextricably linked to the security and safety of the EPR system, including such issues as who will have control over and access to the data.
Dr Martyn Thomas FREng, Fellow of The Royal Academy of Engineering and advisor to the project said “Y Touring Theatre Company and the playwright Ben Musgrave made these complex issues intelligible and moving, and the teenagers showed that they are able to make an important contribution to decisions that may affect the rest of their lives. There should be many more projects like this.“
“This has been a fascinating project, giving The Royal Academy of Engineering the opportunity to use creative methods to help young people explore the personal aspect of new technology and the impact of engineering on society” says Dr Lesley Paterson, Head of Public Engagement at The Royal Academy of Engineering. “Young people have shown that they are savvy about the power of electronic personal information and the need for data security. Even though they are willing to publish their own details in what they view as friendly environments they are very clear about wanting to keep their medical details under their own control and away from the ‘wrong hands’ which includes the potential employers, commercial companies and parents.”
The research has been funded by the Wellcome Trust and the Research Councils and was carried out in partnership with the Y Touring Theatre Company. In order to carry out the research, the Academy conducted electronic polling with nearly 3000 teenagers; led focus groups and held a unique 2 day conference, entitled Mind Your Own Business, for a group of young people to develop more in-depth views. Y Touring’s play, Breathing Country, was central to this research project and was used as an engaging way to generate debate and stimulate discussion with young people. Each performance was followed with a live debate.
The report was launched today (11 October) as part of a joint event with the New Economics Foundation, who also launched their report: Who Sees What: Exploring public views on personal electronic health records.
Notes for editors
The Academy’s report Privacy and Prejudice: young people’s views on the development and use of Electronic Patient Records (911.18 KB) is available online.
A parallel survey to be published today (11 October) by the New Economics Foundation (nef) and the Centre for Science Education at Sheffield Hallam University says that the digitisation of patient records needs much wider consultation if the NHS is to retain public confidence in patient confidentiality, see www.neweconomics.org
Founded in 1976, The Royal Academy of Engineering promotes the engineering and technological welfare of the country. Our fellowship – comprising the UK’s most eminent engineers – provides the leadership and expertise for our activities, which focus on the relationships between engineering, technology, and the quality of life. As a national academy, we provide independent and impartial advice to Government; work to secure the next generation of engineers; and provide a voice for Britain’s engineering community.
For more information about Y Touring, Central YMCA’s award winning theatre company, and the Breathing Country performance, see www.ytouring.org.uk/productions
For more information please contact
Nicola Hern, tel. 07980 098652; email: Nicola Hern
Jane Sutton at the Royal Academy of Engineering
Tel. 020 7766 0636; email: Jane Sutton