The National quality of life (qol) metric was developed to better understand how well people are living after a diagnosis of cancer. Three of the acute Trusts within the NCEL footprint were involved in the pilot project and were asked to:
- Test and develop digital data collection methods that met central requirements and were interoperable with local systems.
- Collect data to be shared with Public Health England for analysis and reporting.
- Contribute to pilot evaluation, including feasibility and acceptability of data collection.
- Contribute to the understanding of the impact of the new data collection on local services, and feed into plans for national rollout.
Eligible individuals were contacted by the project team and asked to participate by completing a survey.
The Centre for Cancer Outcomes played a key role in NCEL’s successful contribution to this National pilot project. Firstly, we used our comprehensive knowledge of routinely collected data to build a dataset and inform a data workflow. We then created detailed data sharing agreements to ensure that data was handled and stored both safely and legally. We used our established relationships with the acute Trusts to set up local data extraction scripts that were ran monthly. We designed and built a custom database to house the data. We gave the database an intuitive front end which summarised the number of completed surveys, provided alerts, generated recruitment and reminder letters and consolidated figures for submission to PHE.
We provided detailed local analysis which informed NCEL’s rollout recommendations to the National team. Our analysis was presented to clinical teams locally to aid their understanding of commonly reported concerns. We advised on how data collected via the survey might be used to identify opportunities to provide additional services to help people living with and beyond cancer.