We want to ensure that patient data is used ethically and is focused on patient impact now and in the future. To improve the trustworthiness of data-driven research we want to promote responsible, transparent and secure practice.
An essential part of this is making data-driven research understandable and focused on the needs and concerns of people affected by cancer and the wider public.
The resources on this page are designed to help researchers improve how they involve patients and the public in the design, development, evaluation, implementation and dissemination of data-driven research. They can also support researchers in communicating about their work to the public in easier ways to understand.
Explore how you can help shape our work by taking part in patient involvement activities.
We developed this resource to help you effectively involve people affected by cancer and the public in your research. This guide explains the concepts of data science, the role of AI in cancer research and our research priorities in an easy-to-understand way.
The Public Engagement in Data Research Initiative (PEDRI) aims to shape better data research. PEDRI is a UK partnership and an important hub of national resources. Explore its tools and guidance to support meaningful public involvement and engagement.
Our cancer data patient and public community is a group of people with lived experience of cancer. They help shape data-driven research projects and guide decisions about how researchers use data. Share this opportunity with your patient representatives and let us know if you have involvement and engagement activities where our community could contribute.
use MY data is a trusted voice for patients and the public in all discussions about the use of data for research and improving healthcare. use MY data can advise researchers on patient data policies and initiatives, provide a safe space to test research ideas and help you find the right people for engagement projects.
Patient involvement can improve the quality and relevant of your research for cancer patients. Our toolkit provides guidance, tips and templates to help you plan, deliver and evaluate your patient involvement.
Patient advocate Steve Clark tells us in this article why patient involvement is so much more than just a requirement and how it can bolster your research in surprising ways.
Contact our research data team for support, guidance or other enquiries.
