How do you make sure the data you are releasing is going to be used appropriately?
The National Disease Registration Service (NDRS) has legal permission to collect data on patients with cancer to make sure they can protect the public’s health. The data can only be used for health care purposes, and NDRS has an absolute responsibility to protect every patient’s confidentiality. This means that when NDRS gets a request for data they have to check that the use the recipient is proposing is appropriate, if it is for research, that it is ethical, and that the data required does not put patient confidentiality at risk. NDRS must also apply the Caldicott Principles to ensure they only provide the minimum amount of data when someone with permission asks. Inevitably, this process takes time, but the thoroughness is vital because protecting your privacy is important to us.