Table 2 Key findings from the workshops and actions taken by the research teams
Key learning point | Action taken |
|---|---|
Increasing public and patient trust | |
Improved awareness of how the data is used including positive outcomes of data use | Public engagement events e.g. Be Curious at University of Leeds Conference presentations including parent and young persons’ and carer representatives Easily accessible websites written in plain English Patient information resources at sites of data collection e.g. cancer outpatient clinics, teenage cancer wards Incorporation of infographics showing research outputs into posters Newsletters |
Enable young people to take responsibility of own data | Having information about our data use available for those who want to learn more Continuing to provide the option to opt out of data sharing and stating this on information resources |
Research priorities for CYP using healthcare data | |
Late effects | Successful in a Teenage and Young Adult Cancer (TYAC) grant to look at the risk of kidney injury in Teenage and Young Adult cancer patients using healthcare data. The research advisory group for this project includes three participants from these workshops PhD project looking at cardiometabolic late effects Collection of Patient Reported Outcome Measures (PROMs) which patients can view and use to make informed treatment decisions |
Social and educational outcomes | YSRCCYP continue to pursue these datasets as part of ongoing research objectives |
Data sharing in rare tumours | BENCHISTA has successfully gained approval for international data sharing through population-based cancer registries to compare tumour stage at diagnosis of childhood cancers |