Further improving the coordinated collection and secure sharing of high-quality health data for research purposes could lead to transformative advances in cancer research and care. NCRI has developed working relationships with organisations such as Health Data Research UK (HDR UK) and Public Health England (PHE) and we aim to support them in their endeavour to enable researchers to effectively and safely use health data for patient benefit.
NCRI utilised its connections with multidisciplinary experts to convene a group of specialists in cancer-related health data to advise on HDR UK’s strategy. The group discussed what is needed to make health data more accessible to cancer researchers and the role the NCRI could play in driving cancer-related health data research. Key points were raised on trust and safety, the use of AI and the need to facilitate and support Patient and Public Involvement and Engagement (PPIE) on research projects that use patients’ health data.
Using its access to a vast number of cancer researchers, NCRI conducted a survey exploring their experiences when accessing health data. We found that less than half of respondents were completely successful in accessing the health data they requested. Respondents cited a range of barriers but also offered valuable suggestions on changes that could be implemented to facilitate safe and efficient access to health data for research.
This project has already raised awareness of the current issues in using health data for research and increased the profile of data research. Together with NCRI Partners and through our strategic partnership with HDR UK, we are continuing to work on effective solutions to the barriers that were highlighted. It is hoped that by focusing on this strategic area, access to health data can be improved, resulting in better outcomes for patients.