What are our Priority Data Services?
Our priority data services focus on three main areas – Access, Infrastructure and Research.
- Access: Better access to high-quality data is key to improving healthcare services and outcomes. We aim to provide quick, predictable data access. The use of pre-approved models and contracts streamlines the process and improves accessibility.
- Infrastructure: Improving the means of data discovery, which includes terms of access and quality of data.
- Research: Ensuring data is of the highest value by improving data curation, analytics and giving data quality assurance.
How will we achieve our data service goals?
We have made important discoveries through our customer engagement in understanding the demand for specific cancer datasets. Cancer is a high priority for researchers and practitioners with a demand for rich, national scale data that covers the whole patient pathway. Improving the quality and access to this kind of data will have many benefits including:
- Allowing users to understand and classify disease, as well as assess the real-world impact of treatments.
- Supporting the monitoring of care (NHS Long-Term Plan’s commitment 5.27) along with identification and correction of inequalities in access or outcomes.
- Supporting study planning and developing synthetic control-arms for clinical trials.
- DATA-CAN is curating data for research, development and innovation taking place across industry, academia and the NHS.
To create the best quality datasets for use in health research, DATA-CAN works with a network of experienced data custodians across the UK. Working together, we are publishing discoverable datasets through the Health Data Research UK Innovation Gateway. The datasets are categorised under four headings:
- Tumour type (e.g. colorectal, lung, breast and prostate cancer)
- Population group (e.g. children and young people)
- Whole patient pathway (e.g. Comprehensive Patient Records dataset of linked primary, secondary and tertiary care data from referral to diagnosis to treatment)
- Novel data sources (e.g. molecular/genetic data from Genomics England).
Importance of Data Service plans
Data Service plans are crucial in supporting researchers to carry out their work. Our Data Service plans benefit researchers in several ways:
- Accessing data – Enabling data access. Making data discoverable via HDR UK Gateway. Clarifying access processes and support access requests. Building a real-time data network.
- Navigating data – Helping navigate UK cancer data and services. Finding data, data curation, data science and patient recruitment services.
- Connecting with patients – Bringing the patient perspective to accelerate legitimate data requests. Supporting clinical trials. Finding patients.
- Safety and security of data – Finding and approving Safe Havens for research if needed. Staffing behind the firewall to clean and curate data. Assessing feasibility.
How can you access data?
The Health Data Research Innovation Gateway has been created to bring together datasets and research from across the UK, with each of the eight individual Health Data Research Hubs contributing. By bringing all data controllers together under the HDR UK Alliance, we are making available data discoverable via the Gateway.
DATA-CAN works with the HDRUK to move away from the initial manual metadata format to deliver real-time metadata through fully documented open software. We are using coded cancer data with internationally recognised open standards that are provided to public health agencies.
Access is initially through existing data custodian processes with DATA-CAN providing support to users and resources to data custodians to reduce workflow delays.