The research developed by the NCRI Groups and funded by NCRI Partners often involves the use of health data. The effective use of health data can accelerate cancer research and improve patient outcomes.
What is health data?
We consider “health data” to be any data that is provided by patients, collected as part of their treatment or obtained from patient samples (e.g., data from Electronic Health Records, imaging data, Hospital Episode Statistics (HES), data collected using apps or wearable devices, omics data from tissue samples, etc.).
The use of health data for research is a priority across the cancer research community. It has been identified as an opportunity by the UK Government and a number of NCRI Partners. We are working with the key players HDR UK, DATA-CAN, NHS Digital and CRUK to identify the challenges of using health data for research:
Barriers to accessing health data
NCRI survey exploring researchers’ experiences when accessing health data showed that less than half of respondents were completely successful in accessing the health data they requested.
Involving patients and the public in health data research
A survey by NCRI, HDR UK, DATA-CAN and use MY data on patient and public involvement in research projects using health data showed 90% of respondents would like more guidance or support with being involved in health data projects.
Issues for early career researchers are particularly acute
Limited timescales, lack of training and support, and the exploratory nature of some projects makes accessing health data particularly challenging for early career researchers.
Dysconnectivity between research funding and data access processes
There is a lack of clarity around the cost of accessing health data making budgeting difficult. Currently, the application for funding and accessing the data are two distinct, time-consuming processes.
NCRI plays a key role in working with health data organisations to overcome these challenges and ensure researchers have the right knowledge, expertise and support to access health data for research.