New NDG guidance enabling better public benefit evaluations when data is to be used in planning, research and innovation

The National Data Guardian has published new guidance, What do we mean by public benefit? Evaluating public benefit when health and adult social care data is used for purposes beyond individual care, to help organisations carry out better public benefit evaluations when they are planning to use, or allow access to, data collected during the delivery of care for planning, research, and innovation projects.

The guidance aims to improve public benefit evaluations by defining and standardising a concept that has previously lacked a clear interpretation or understanding. It is underpinned by a bespoke public dialogue that investigated what people regard as public benefit in this context – ensuring that the public’s views on, and definition of, public benefit factor into data access decision-making.

National Data Guardian, Dr Nicola Byrne, said:

It is my mission to support the health and care system’s shared vision of improved health outcomes for all through the safe, appropriate, and ethical use of data. This vision relies on earning the public’s trust in the use of their data by those who can unlock its potential to deliver improved healthcare services and develop new and improved treatments.

Public engagement consistently confirms the need for use of health and care data to be of benefit to the public. Thus, better evaluations of how the public will benefit from projects which use health and care data for planning and research are a key aspect of earning public trust. Following this guidance will help organisations interpret and apply the concept of public benefit in a way that accurately reflects people’s views on how trust is earned in this context.

Find out more in the National Data Guardian’s press release and blog.