Health Research Support Service provides its first linked, anonymised data set to research study

The pilot NIHR Health Research Support Service (HRSS) has reached a significant point in the development of the service by providing its first linked, anonymised dataset for a research study at Kings College London. The study is investigating how mental disorder in patients impacts upon the diagnosis and treatment of cancer, and to understand if there is any delay in cancer diagnosis and the affect it can have on a patient’s survival.

HRSS’ provision of linked data for research is a significant achievement and the result of a lot of work with the supplier to develop the IT infrastructure required to deliver the service. In addition, activity has been undertaken with data sources to understand the structure of the data to help design the linkage process. 

The Research Capability Programme team, which is running the pilot, has also been working with the South East Research Ethics committee to gain overarching ethics endorsement for the pilot service and the studies involved in it. Likewise, the team has secured overarching endorsement for all the studies in scope from the Ethics and Confidentiality Committee of the National Information Governance Board. These endorsements have reduced the administrative burden on individual researchers, whilst upholding rigorous principles of information governance within the HRSS, which minimise the distribution of identifiable data, and protecting patient confidentiality and privacy.  

The pilot service has also worked with the Medicines and Health Regulatory Authority’s Independent Scientific Advisory Committee to ensure studies are well designed to produce accurate results based upon the data being used to support the research.

Kings College London has started use the data for the research study. The results from this study aim to influence patient care in both oncology and psychiatry and may impact policies that seek to identify and decrease inequalities in cancer incidence, outcome and choice in end of life care.