Public involvement in the governance of population level research

The laws, regulations and processes which have governed medical research need to be updated to handle research which involves data from very large numbers of people. One possibility is to use the current trend in medical research towards involving the public in decisions about research. This is connected to high-profile cases, such as the NHS care.data scheme that was abandoned over controversies over the use of personal data. Involvement is generally taken to be a good thing but it is unclear how it joins up with the changes that are needed in how we govern this type of research. 

Our research connects the problems with governing this research with the range of ways of involving the public. It will do this by clarifying the current governance system failures and the range of involvement strategies that might be used to shape an updated system.