Publications

Access to healthcare data is only of benefit if it can improve disease outcomes

the BMJ Opinion, published November 14, 2019

Original paper -Variation in post-colonoscopy colorectal cancer across colonoscopy providers in English National Health Service: population based cohort study

Being part of the patient public group of the UK Colorectal Cancer Intelligence Hub has helped these authors recognise the power of healthcare data in research

The collection and use of healthcare data can divide opinion. Many people recognise that when used responsibly, the intelligence that is derived from healthcare data can save lives. However, some people are not aware that healthcare data is routinely generated or that it can be used for public benefit. Others have concerns about the use of data and how the data are accessed. The UK Colorectal Cancer Intelligence Hub is a programme of work that has been established to address the challenges and concerns that people have about the efficient and secure use of patient data, specifically in regards to bowel cancer. This has been done through the creation of a single, secure colorectal research data system known as CORECT-R.

Being able to access and analyse the data is good, however it is only of benefit if it can be turned into intelligence that can help improve disease outcomes.

A key part of our role as the Patient-Public Group for the Hub, is to be involved as equal partners in the work of the programme and to ensure that patient data is used… for the purposes that patients deem to be the most acceptable and the most important, and so we were very interested in being involved when Nick Burr approached the group for input into his study on Post-Colonoscopy Colorectal Cancers (PCCRC’s), the results of which have just been published in The BMJ.

As a group of patients and the public, who have or have had bowel cancer, or have an interest in the use of patient data, we are familiar with colonoscopy and its role as the main diagnostic test to both detect bowel cancer and also to prevent it. Prior to our involvement in this study we were not aware that, despite having a colonoscopy, cancers can be left undetected. This caused the group concern and led us to question the extent of this problem, whether there is variation between providers of colonoscopy, and whether certain groups are more at risk of their cancers being left undetected.

Following the publication of the paper, we are heartened by the results which show a reduction in post-colonoscopy colorectal cancer (PCCRC) rates in England from 9.0% in 2005 to 6.5% in 2013. However, we feel that the variation found between colonoscopy providers is concerning. If the overall rate across the entire study period was harmonised to the rate seen in the Bowel Cancer Screening Programme, 3,900 bowel cancers might have been diagnosed earlier or even prevented. This finding is significant. All colonoscopies performed as part of the Bowel Cancer Screening Programme take place within Joint Advisory Group on GI Endoscopy (JAG)–accredited screening centres by colonoscopists who have undergone an additional accreditation process and adhere to a set of strict performance criteria. This shows that when strict standards are applied, quality can be improved and lives can potentially be saved.

Another finding of the paper of particular interest to us, is how those most at risk of PCCRCs are defined. Many members of our PPG have these risk factors, such as previous cancers, inflammatory bowel disease, and diverticular disease. Increasing awareness of these groups among endoscopists has the potential for even more cancers to be diagnosed earlier or even prevented.

For us this paper is an excellent example of how intelligence that is generated through the use of healthcare data can have a real world impact on patients. It also strengthens our resolve for advocating the use of patient data for research.

#datasaveslives

Emily Boldison, on behalf of the UK Colorectal Cancer Intelligence Hub Patient-Public Group

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, published March 31, 2021
Co-authored by Steve Clark, BCI UK PPG member

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

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.

Data Resource Profile: The COloRECTal cancer data Repository (CORECT-R)

International Journal of Epidemiology, May 2021
Co-authored by Paul Ewart, Chair of the BCI UK PPG

Data Resource Profile: The COloRECTal cancer data repository (CORECT-R)

Key Features

CORECT-R provides an extremely secure, but researcher accessible, environment in which datasets relevant to colorectal cancer in the UK are efficiently linked, curated and analysed. It aims to overcome the significant challenges and duplication associated with access to administrative datasets and drive the production of intelligence to improve outcomes from the disease.
Ethical approval to establish CORECT-R as a research database was obtained in 2018. Currently, the resource predominantly contains secondary administrative datasets relevant to the English colorectal cancer population. Expansion to cover the whole of the UK is under way.
CORECT-R aims to capture detailed diagnostic, management and outcome information about all UK individuals diagnosed with, or at risk of developing, colorectal cancer. It currently contains wide-ranging information on more than 600 000 tumours. The confidentiality and security of the data within the resource is paramount and extensive procedures are in place to protect the information.
CORECT-R has been developed by the UK Colorectal Cancer Intelligence Hub. Funded by Cancer Research UK, it is a collaboration between academics, clinical experts, patients and the public. Visit [https://www.ndph.ox.ac.uk/corectr] or contact [crchub@leeds.ac.uk] to obtain more information on how to access CORECT-R, collaborate with the Hub team and investigate questions of interest

Lynch Syndrome - Hidden in Plain Sight

Histopathology, published July 2021

Author Katie McSweeney, BCI UK PPG Member

Lynch Syndrome - Hidden in Plain Sight

A patient commentary on the paper Lynch syndrome screening in colorectal cancer: results of a prospective two-year regional programme validating the NICE diagnostics guidance pathway across a 5.2 million population