Contributions of authors
Elizabeth A Davies (https://orcid.org/0000-0003-2325-0849), Professor in Cancer and Public Health at King’s College London, led the overall study, edited each chapter, wrote the abstract, drew together the findings, wrote Chapter 7 and co-ordinated report development.
Margreet Lüchtenborg (https://orcid.org/0000-0001-8694-4819), Lecturer in Cancer Epidemiology at NDRS, NHS England and Honorary Lecturer in Cancer Epidemiology at King’s College London, designed and checked the epidemiological analyses and wrote Chapter 3.
Rachael Maree Hunter (https://orcid.org/0000-0002-7447-8934), Professor of Health Economics at University College London, designed and supervised the health economic analyses and wrote Chapter 4.
Renske Visser (https://orcid.org/0000-0002-6086-5837), Research Fellow at Surrey University, designed, undertook and analysed the qualitative interviews and drafted Chapter 5.
Jennie Huynh (https://orcid.org/0000-0003-1232-4152), Research Assistant in Cancer Epidemiology at King’s College London, helped to design and undertake the epidemiological and health economic analyses, helped to write Chapters 3 and 4, and reviewed all the figures and references.
Ross Pow (https://orcid.org/0009-0005-0951-9970), Director, The Power of Numbers Ltd, designed and facilitated the Policy Lab event and wrote Chapter 6.
Emma Plugge (https://orcid.org/0000-0002-8359-0071), Professor at University of Southampton, and Consultant in Public Health, Health Equity and Inclusion Health, UK Health Security Agency, helped to design and interpret the qualitative study and reviewed and edited the full report.
Rachel M Taylor (https://orcid.org/0000-0002-0853-0925), Director of the Centre for Nurse, Midwife and Allied Health Profession Research, helped to design the Policy Lab event and reviewed and edited the full report.
Jo Armes (https://orcid.org/0000-0002-7994-0796), Professor of Cancer Care at the University of Surrey, designed and analysed the qualitative study, helped write and revise Chapter 5 and reviewed and edited the full report.
Acknowledgements
We thank Josefien Breedvelt, Ruth Jack, Paula Harriott, and Jeremy Whelan for their help with the design of this study, and Philomena Bredin of King’s College London for her administrative support throughout. We thank members of our Project Advisory Group, chaired by Baroness Delyth Morgan, and our Independent Steering Group, chaired by Mr Richard Stephens, for their support and advice throughout the project. Finally, we thank Revolving Doors Agency research managers Ann Hanrahan and Philip Mullen and Experts by Experience Alyce-Ellen Barber, Sue Wheatcroft and Anthony X for their involvement in and support of this project.
Funding was also received by Elizabeth A Davies from King’s College London and by Jo Armes from University of Surrey – Strategic Priorities Fund (SPF) Allocation 2019/20.
Data-sharing statement
Data for the epidemiological, health economic and CPES analyses are collated, owned, maintained and quality assured by the NDRS within NHS England. The authors do not own these data and are therefore not permitted to share or provide these data other than in scientific communication format. Other data requests should be submitted to the corresponding author for consideration. Access to some anonymised data may be granted following review.
Ethics statement
The National Disease Registration Service (NDRS) has approval from the Confidentiality Advisory Group of the NHS Health Research Authority to carry out surveillance using the data they collect on all cancer patients under section 251 of the NHS Act 2006. All analyses of national data were undertaken by Jennie Huynh and Margreet Lüchtenborg, who worked within NDRS. Therefore, separate ethical approval was not required for the phase 1 epidemiological, health economic or phase 2 survey analyses. The qualitative interview study in phase 2 received favourable research ethics approval from the Health Research Authority (REC 19/LO/1073) and HMPPS (reference 2019-306).
The methods used in the development of recommendations including the development of a film, co-design groups and the Policy Lab event in phase 3 received approval from King’s College London Research Ethics Committee (reference MRA-20/21-22403).
Information governance statement
King’s College London is committed to handling all personal information in line with the UK Data Protection Act (2018) and the General Data Protection Regulation (EU GDPR) 2016/679. Under the Data Protection legislation, King’s College London is the Data Controller, and you can find out more about how it handles personal data, including how to exercise your individual rights and the contact details for its Data Protection Office here: https://www.kcl.ac.uk/research/research-environment/rgei/research-governance
Disclosure of interests
Full disclosure of interests: Completed ICMJE forms for all authors, including all related interests, are available in the toolkit on the NIHR Journals Library report publication page at https://doi.org/10.3310/HYRT9622.
Primary conflicts of interest: Elizabeth A Davies reports Irish Cancer Society review of proposals (November 2021), Singapore government review of proposals (May 2021), and Emory College Summer School lectures (July 2019). Emme Plugge was a mem ber of the Systematic Reviews National Institute for Health and Care Research (NIHR) Cochrane Incentive Awards. Rachel M Taylor reports Margaret Spittle Fellowship, NIHR, NCEL ICS, UCLH Charity and Sarcoma UK (all payments to institution); travel to present a keynote lecture in Toronto, ON; being a member of the RCN Research Society Steering Committee; being a member of Teenagers and Young Adults with Cancer (TYAC) Professional Education Group; being a member of TYAC Research Advisory Group; being an ambassador for Sarcoma UK; and leading the patient outcome work package for the FOSTER (European osteosarcoma) consortium.
Disclaimers
This article presents independent research funded by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care.