Working with data controllers
Data controllers – commonly NHS organisations, charities and universities – control the procedures and purpose of data usage.
How we support data controllers
- Discoverability – We make it easier to share cancer data safely to maximise research value to the NHS. We support researchers to find cancer data by publishing summary metadata on the HDRUK gateway.
- Help with access process – We support the process of actual data access (such as finding users, setting up legal and regulatory agreements, supporting you on any pricing or commercial terms, ensuring the right IG & governance is in place).
- Resources (people to help) – We support data curation (such as improving the quality and organisation of data), delivering services for you or processing your data.
DATA-CAN will not be a data controller and all data access and services rely on the approval of existing UK data controllers, who will continue to decide if the proposed research demonstrates the potential benefits to patients and the health service in the UK and whether there is a legal basis to provide access to the data under the Data Protection Act 2018, the General Data Protection Regulations and the Common Law Duty of Confidentiality. We do not grant access to or sell data, and we will become sustainable by delivering and charging for data services such as curation and linkage.
The UK Cancer Registries have an excellent reputation and have already worked with a range of academic, patient and commercial groups. DATA-CAN has made contact with the UK Cancer Registries to support the accessibility and quality of UK cancer data for patient-approved research. For example, together we can supplement clinical trials data with registry data for long term follow-up. In other areas, we have heard researchers face challenges accessing linked primary and secondary care data, and around the predictability and timeframes for the data access process. So we are currently engaging with the UK Cancer Registries to understand the challenges in cancer data research, and to support where possible.
How can I find out more about DATA-CAN services?
Get in touch with us at contact@data-can.org.uk to find out how we can support you.