Patient and public involvement to inform priorities and practice for research using existing healthcare data for children's and young people's cancers.

ABSTRACT:

Background

In the United Kingdom, healthcare data is collected on all patients receiving National Health Service (NHS) care, including children and young people (CYP) with cancer. This data is used to inform service delivery, and with special permissions used for research. The use of routinely collected health data in research is an advancing field with huge potential benefit, particularly in CYP with cancer where case numbers are small and the impact across the life course can be significant. Patient and public involvement (PPI) exercise aims: Identify current barriers to trust relating to the use of healthcare data for research. Determine ways to increase public and patient confidence in the use of healthcare data in research. Define areas of research importance to CYP and their

SUBMITTER: Hughes NF 

PROVIDER: S-EPMC10466824 | biostudies-literature | 2023 Aug

REPOSITORIES: biostudies-literature