The national data guardian released a review of data security, consent and opt-outs (also known as the Caldicott Review) in July 2016.
There has been much public debate about the sharing of medical data for research in recent years and concerns over data security, privacy and access.
Patients with rare and genetic conditions have a unique perspective on data sharing – often being eager to share their data for research, but also being at a higher risk of reidentification due to the rarity of their condition.
Our response to the national data guardian about the current proposals can be read here. When the proposals were released our Policy Officer, Louise, also wrote a blog on the issue, looking at the historical context of the review, data security and consent models which you can read here.