Suchergebnisse

In this paper, we carry out a retrospective analysis of the Scottish and English cancer registries for the case of colorectal cancer. We aim to assess the comparability of variable coding between the datasets and create derived variables and open access code for use by researchers working with linked Scottish and English cancer registry data.
We bring together the national data dictionaries for the Scottish and English cancer registries and define a list of targeted variables. We establish the consistency of variable coding across the two registries, identifying fully complete, near complete, partial, composite and impossible matched variables. In the case of near complete, partial and composite matches, we create derived variables between the two registries. We liaise with NHS staff working within the retrospective registry teams to validate the derivations. Finally, we produce corresponding documentation for the dissemination and preservation of final data items.
We considered 63 variables for analysis. Preliminary results show that there is a high degree of similarity between the Scottish and English cancer registries. In particular, 82% of variables were fully, nearly or partially matched, with the remaining 12% and 6% composite matches and impossible matches respectively. The session with the respective cancer registry teams will take place in May 2022. At which point we will present our existing results and seek their input into the final derived data items. Following this, we will publish documentation detailing the derived variables and associated code, to be made available to other researchers working with the Scottish and English cancer registries.
This study provides a useful starting point for any researchers seeking to use the linked Scottish and English cancer registry data for applied research. Whilst our analysis has focused on colorectal cancer, the majority of variables are applicable for any cancer. Future research should extend this work to include staging variables for other cancers.

IntroductionCurrent 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.
ObjectiveAcknowledging 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).
MethodsThis paper describes the process of creating a novel, national dataset in Scotland.
ResultsIn 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.
ConclusionsWe 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.

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.