6 May 2025 | Samaira Khan, Operational Lead at PEDRI
Thanks to funding from Cancer Research UK (CRUK), we are launching a new project to explore how to better involve children and young people with cancer, and their families, in research that uses their data. Right now, it’s hard for data researchers to connect with patients in a way that feels meaningful, especially when families are not directly linked to hospitals or care teams.
Funded through the CRUK Research Data Community Demonstration Projects and in partnership with CRUK, this project will begin to scope the creation of a national digital platform where patients, families and researchers can easily connect. Such a platform could include video chats, surveys or even virtual environments to help gather input and feedback. Most importantly, the platform would be designed with patients and families to make sure it truly works for them.
This work builds on CRUK’s Research Data Strategy, which highlights the need to earn and maintain public trust and ensure diversity and inclusion in all areas of research. One thing has become clear through conversations with researchers and patients alike: there is a growing demand for more accessible, inclusive and effective ways to involve patients in data-driven research, particularly in the rare and complex space of children’s cancers.
We are particularly proud to be embedding the PEDRI Good Practice Standards for public involvement and engagement in data research throughout this project. These standards will guide every stage, ensuring transparency, accessibility and inclusion remain at the heart of what we do.
The insights gathered will culminate in a final report, laying the groundwork for the future of digital patient engagement in data research.
This is a collaborative effort and one that we hope will create a long-lasting legacy. By investing time and care into co-designing a platform with patients and their families, we can help build a culture of meaningful, diverse and empowering engagement in children and young people cancer data research.
We are thrilled to be leading this important work and can’t wait to share more as the project progresses. Stay tuned for updates!
Any questions? Get in touch with us at contact@pedri.org.uk.
