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

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 carers using healthcare data. // Methods: Young people currently aged between 16 and 25 years who had a cancer diagnosis before the age of 20 years and carers of a young person with cancer were invited to take part via social media and existing networks of service users. Data was collected during two interactive online workshops totalling 5 h and comprising of presentations from health data experts, case-studies and group discussions. With participant consent the workshops were recorded, transcribed verbatim and analysed using thematic analysis. // Results: Ten young people and six carers attended workshop one. Four young people and four carers returned for workshop two. Lack of awareness of how data is used, and negative media reporting were seen as the main causes of mistrust. Better communication and education on how data is used were felt to be important to improving public confidence. Participants want the ability to have control over their own data use. Late effects, social and education outcomes and research on rare tumours were described as key research priorities for data use. // Conclusions: In order to improve public and patient trust in our use of data for research, we need to improve communication about how data is used and the benefits that arise

Successful public and patient involvement in bowel cancer research using linked administrative health data.

This poster aims to highlight the impact of a public/patient group (PPG) involved in two large programmes that are researching bowel cancer using routine, linked administrative datasets in England and Scotland. The PPG consists of ten independent patients or carers who have lived, or shared, experiences of bowel cancer. Members are involved in the full life cycle of individual research projects from project development, to research in progress and onto dissemination of the work once published. They are actively involved in shaping the strategic direction of the programmes and are a key part of the data access process. The group meets once a month and acts as a ‘critical friend’ to the researchers. The PPG have produced over 18 plain language summaries to ensure accessibility of the programmes’ research to everyone and that it reaches those directly affected by bowel cancer. They have produced four publications including one Editorial, one Opinion piece and two co-authored manuscripts. The group have also co-developed patient information sheets and consent forms with clinicians that are now used in various cancer centres across Yorkshire. Furthermore, one of the PPG members co-presenting a webinar, which highlighted their involvement in developing a unique linked bowel cancer dataset to an international audience of over 100 people. The PPG has demonstrated that involving the public and patients in the development of data linkage research is hugely beneficial. Their experience and knowledge shapes research that ultimately improves care. The success of our PPG is an exemplar for embedding patients and public involvement in research

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 carers using healthcare data. Methods Young people currently aged between 16 and 25 years who had a cancer diagnosis before the age of 20 years and carers of a young person with cancer were invited to take part via social media and existing networks of service users. Data was collected during two interactive online workshops totalling 5 h and comprising of presentations from health data experts, case-studies and group discussions. With participant consent the workshops were recorded, transcribed verbatim and analysed using thematic analysis. Results Ten young people and six carers attended workshop one. Four young people and four carers returned for workshop two. Lack of awareness of how data is used, and negative media reporting were seen as the main causes of mistrust. Better communication and education on how data is used were felt to be important to improving public confidence. Participants want the ability to have control over their own data use. Late effects, social and education outcomes and research on rare tumours were described as key research priorities for data use. Conclusions In order to improve public and patient trust in our use of data for research, we need to improve communication about how data is used and the benefits that arise