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

Competing interests: None declared