The Royal Academy of Engineering has released the report from it's research project into young people's attitudes towards towards electronic patient records. Privacy and Prejudice (PDF).
The research used a novel methodology which included touring a play ('Breathing Country') that engaged with the topic of electronic patient records, their potential implications and consequences, as well as some of their positive uses in research and medical development. This was supported by community researchers - groups of young people who were supported in conducting their own research in their schools, a 'deliberative conference' and focus groups. The play incorporated electronic voting technology to pose questions to the audiance before, during and after the play. The report suggests that this methodology was able to get participants to engage with topics more deeply, to provide information without being too dry, and that it tended to develop rather than substantially change attitudes.
The report finds that privacy is highly important to young people, even if they do post things on Facebook. Concerns primarily revolve around issues of control of personal information and how young people can exercise this. Facebook is not seen as violating their privacy because there is a choice to engage, and a choice about what to post online. Unease over sharing information is related to the type of information, and who might have access to it, as well as to the consequences from sharing information.
The report finds an initially low level of understanding of EPI and some assumption that health information is already kept electronically or online, as well as low awareness of current confidentiality rights. There were also many concerns linked to the security of a records system, including human falliability (both in terms of a lack of skill, and a tendency to pry). Control over one's health information includes being kept up to date with the workings of the system and how best to use it. This requires a communication strategy across a range of media, including those that young people are likely to engage with, whilst at the same time listening and responding to the specific concerns that young people have identified. Young people in the study were happier to trust the NHS with their data than the government as whole. The 'wrong hands' into which data might fall included commerical and private companies, advertising agencies, people who wanted to sell the data, insurance companies, potential employers, the media, and sometimes government. Interactions between young people and their parents were of particular importance.
If this report gives an accurate perspectives on the concerns of young people over EPR, when they are honestly and openly engaged with, then I'm quite impressed by the issues that the young people who participated in this process engaged with, and the level of maturity in the questions they asked (for example, concern about records being permanent and being 'labelled for life). Based on this, I'm included to support their calls for control of their own data at a young age, rather than this being the sole preserve of their parents until age 18 (all participants from 14+ felt they were old enough to handle their own data).