Creation of the first national linked colorectal cancer dataset in Scotland: prospects for future research and a reflection on lessons learned

Hanna, C. , Lemmon, E., Ennis, H., Jones, R. , Hay, J., Halliday, R., Clark, S., Morris, E. and Hall, P. (2021) Creation of the first national linked colorectal cancer dataset in Scotland: prospects for future research and a reflection on lessons learned. International Journal of Population Data Science, 6(1), 10. (doi: 10.23889/ijpds.v6i1.1654)

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Abstract

Introduction: Current understanding of cancer patients, their treatment pathways and outcomes relies mainly on information from clinical trials and prospective research studies representing a selected sub-set of the patient population. Whole-population analysis is necessary if we are to assess the true impact of new interventions or policy in a real-world setting. Accurate measurement of geographic variation in healthcare use and outcomes also relies on population-level data. Routine access to such data offers efficiency in research resource allocation and a basis for policy that addresses inequalities in care provision. Objective: Acknowledging these benefits, the objective of this project was to create a population level dataset in Scotland of patients with a diagnosis of colorectal cancer (CRC). Methods: This paper describes the process of creating a novel, national dataset in Scotland. Results: In total, thirty two separate healthcare administrative datasets have been linked to provide a comprehensive resource to investigate the management pathways and outcomes for patients with CRC in Scotland, as well as the costs of providing CRC treatment. This is the first time that chemotherapy prescribing and national audit datasets have been linked with the Scottish Cancer Registry on a national scale. Conclusions: We describe how the acquired dataset can be used as a research resource and reflect on the data access challenges relating to its creation. Lessons learned from this process and the policy implications for future studies using administrative cancer data are highlighted.

Item Type:Articles
Additional Information:This project is funded by Cancer Research UK (CRUK) Ref: C23434/A23706 “Creating a UK Colorectal Cancer Intelligence Hub”. The PhD project is funded by the Beatson Cancer Charity. CRH holds a Clinical Trials Fellowship Grant from CRUK and the University of Glasgow (Grant ID: C61974/A2429)
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Hanna, Catherine and Halliday, Mr Roger and Jones, Professor Robert
Authors: Hanna, C., Lemmon, E., Ennis, H., Jones, R., Hay, J., Halliday, R., Clark, S., Morris, E., and Hall, P.
College/School:College of Medical Veterinary and Life Sciences > Institute of Cancer Sciences
College of Medical Veterinary and Life Sciences > Institute of Health and Wellbeing > Public Health
Journal Name:International Journal of Population Data Science
Publisher:Swansea University
ISSN:2399-4908
ISSN (Online):2399-4908
Copyright Holders:Copyright © 2021 The Authors
First Published:First published in International Journal of Population Data Science 6(1):10
Publisher Policy:Reproduced under a Creative Commons License

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Project CodeAward NoProject NamePrincipal InvestigatorFunder's NameFunder RefLead Dept
174279CRUK CTU Glasgow - Clinical Trial FellowshipCatherine HannaCancer Research UK (CRUK)C61974/A24293Institute of Cancer Sciences