Develop shared insight for the system

The evidence:

The system relies on fragmented data which is often inaccessible and not timely. No single source of data currently exists – so decisions within organisations can be made on out-of-date data and limited insight.

Why do we have such poor national data for children and young people with cancer? This inhibits us having the evidence we need to act.
How can we collectively build the data and research to further our understanding of what has the greatest impact on the long-term wellbeing of children and young people with cancer and their families?
How do we use data to routinely learn and improve, together?
How can we build data on inequity within the system?

As a Collective, we want to develop shared insight for the system. The Dartington report is out first shared data set. Subsequent North Star Cancer Collective research (e.g. into mental health) provides further shared data sets.
Building on these as we continue our Collective work will lead to an increase in accessible and timely data on the things that matter most to children, young people and families. This will fuel our shared work, driving the actions we take to benefit children and young people with cancer, and their families

We believe the long-term wellbeing of children and young people with cancer and their families will be improved by shared, accessible and timely data (e.g. on diagnosis, treatment, outcomes, and experiences). This is particularly true for those facing inequity of access, experience and outcomes.