Develop shared insight for the system
The evidence:
The system relies on fragmented data which is often inaccessible and not timely, so decisions by organisations can be made on out-of-date data and limited insight.
What we are curious about:
Why do we have such poor national data for children and young people with cancer?
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?
What we want to see happen:
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 provides further shared data sets.
Doing this 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 improve the experience and outcomes of children and young people with cancer, and their families.
Why is this important?
We believe that having shared, accessible and timely data (e.g. on diagnosis, treatment, outcomes, and experiences) will improve the long-term wellbeing of children and young people with cancer and their families. This is particularly true for those facing inequity of access, experience and outcomes.