Should I share my mental health data?

The sharing of our health data is a really important issue in mental health research, and data sharing more generally is something which has received a lot of attention from the public and from the media in recent years. Our electronic medical records, together with other data stored by the NHS about our healthcare, are an extremely valuable resource for researchers. Easier access to this data would bring massive benefits to mental health research, and would mean that research could be done more quickly, in larger quantities, would be of a greater quality, and would be more cost-effective. This research has the potential to advance our healthcare services, including in improving patient care, in the development of new treatments and by allowing the NHS to plan its services more effectively. However, data sharing is not without risks, and previous research shows that the public have many concerns about allowing their data to be used for research. For example, some people are concerned that sharing their data is an invasion of their privacy and do not trust organisations who want to use it, while others worry about potential security breaches and what would happen if their data ended up in the wrong hands.

votingPublic attitudes towards data sharing is clearly something which needs to be carefully considered before we can create a data sharing culture in mental health research, and a lot of researchers are now starting to look at this. CAMHS.Digital want to find out about young people’s views of sharing their mental health data, to see how they compare with the wider public and to ensure that they are involved in decisions which will affect them. To do this, we are conducting a series of citizen-jury inspired workshops in secondary schools, where the risks and benefits of using mental health data for research purposes will be collaboratively explored. Young people will be provided with lots of information about data sharing, and will have the chance to discuss their views, as well as vote on which options they think are best.