Medical research relies on timely access to health data. However organizations holding health data, such as universities or hospitals, may not have effective processes in place to allow researchers to use that data. This creates a barrier to innovation.
We launched the health data sharing case studies project to help overcome that barrier. The project report is based on our interviews with data stakeholders and includes two detailed case studies on data sharing at the Cambridge University Hospitals Trust and the Centre for Epidemiology Versus Arthritis at the University of Manchester. Other organizations can use the case studies as ‘worked examples’ showing how to implement data sharing in practice.
The report includes extensive analysis. Feedback and commentary from our panel of four reviewers, including the Office of the National Data Guardian and the Medical Research Council, gives confidence that it aligns with standard-setters’ expectations.
Although the report focuses on health data, it is relevant to any organization collecting and using personal and sensitive data. It describes the roles, processes and technology underpinning effective data sharing. In other words, the decisions an organization makes about who can use data, subject to what controls and for what purposes. Creating and maintaining these roles, processes and technology contribute to 'data readiness', meaning that an organization is poised to reap the benefits of data.