National Data Guardian: public dialogue an ‘essential requirement’ of data projects

Dame Fiona Caldicott has set out her priorities as National Data Guardian for Health and Social Care, recognising the Council’s conclusion that public dialogue is essential before embarking on major projects to gather and share data.

“As the Nuffield Council for Bioethics made clear in a report published this year, ‘The collection, linking and use of data in biomedical research and health care: ethical issues’, there is an essential requirement to engage in such a dialogue, before embarking on major projects to gather and share data.”

In her statement, Dame Fiona sets out her three guiding principles, which include:

• Supporting and reinforcing the responsibility on health and social care professionals to share information that directly affects the care of the person they are treating or supporting.

• Promoting openness towards citizens about how their health and care data is being used, allowing public benefit to be balanced with the public’s right to know and, if they wish, object.

• Fostering dialogue with the public about how we all wish information to be used, recognising that many interests need to have voices in the debate, including commercial companies, researchers, and service managers.

The National Data Guardian works independently of government, providing guidance and challenge to it on important data issues. A consultation has been launched on the responsibility of the role.