Health data is important. It’s important it’s shared with researchers to improve health outcomes, but it’s also important to protect it given its highly sensitive nature. Striking the right balance for responsible data sharing can be hard. We heard from the sector that there was a lot of uncertainty and confusion as to what exactly best practices for sharing health data for research were, and how this is preventing or slowing data sharing which should have been possible. There are three areas of uncertainty this project aims to address:
Existing guidance helps but privacy risk, the controls used to mitigate that risk, and the legal reasoning involved, can all be highly context dependent. This means guidance written to cover all the potential use cases in a sector is unlikely to be detailed enough to explain what should be done in any specific situation.
We think that the best way of getting to the necessary level of detail is to identify current leaders in best practice and write up what they’re doing at the level of detail that they operate at internally. To ensure these practices are correct we will then ask the authorities responsible for setting and enforcing the relevant standards and regulations to review these case studies and suggest changes or approve them. We will then publish the approved case studies so that others can see, at an actionable level, what is needed.
We’re working with a range of partners on this project; those providing the case studies, those key standard setters who are reviewing the case studies, and those helping us to communicate and promote the case studies and our findings. We are targeting publication in mid 2020.
If you’d like to learn more about the project, or are interested in being involved, please contact us here.