The DISCOVERY programme: A programme to change cancer diagnosis

“At the same time as the programme ran, cancer survival figures and several other measures of cancer diagnosis improved – and continue to do so. We can never know for sure, but it is highly likely there are people alive today who would not have been so without this body of work.” Prof Richard Neal, a researcher on the DISCOVERY programme.

Through the NCRI Early Diagnosis Subgroup* researchers developed the DISCOVERY programme; a series of studies that aimed to better identify the symptoms of cancer, earlier, and use that to improve cancer diagnosis within primary care. This was a bold and wide-reaching programme of work**.

This programme was developed and monitored with the support of the Early Diagnosis Subgroup. Working with the NCRI’s CSG enabled better collaborative working between researchers, and helped with recruitment for the some of the studies.

These well-established structures support researchers to work together across disciplines, and provide the space and time for working relationships and research to develop where otherwise it may not.

Further, Patient and Public Involvement (PPI) played an integral part in this programme – made possible by the NCRI’s forum of Consumers (people affected by cancer) and the NCRI’s leading approach to PPI across its work. The programme involved people with experience of three exemplar types of cancer (pancreatic, colorectal and lung) to advise them on all stages of research.

The programme was run in three sets of studies. The first set, the SYMPTOM studies, followed patients referred to hospital for investigation of one of the three exemplar cancers. Key findings from these studies found that patients had similar reasons for delay in presentation with symptoms, whether or not they were found to have cancer. Patients also tended to have multiple symptoms when presenting, and to ascribe a benign explanation for the symptoms.

The second set, the CAPER studies, worked to identify and quantify the key symptoms of nine types of cancer as they are presented in Primary Care to support in the evaluation of patients when they present with symptoms.

The third set of studies investigated patient preference with regards to diagnostic processes. As part of this work, the PIVOT study found that there was a strong appetite for investigations of symptoms at a level of risk far below the current NHS threshold for referral.

The DISCOVERY programme results contributed significantly to the 2015 revision of NICE guidance on investigation of cancer, and the PIVOT study of patient preferences clearly catalysed efforts from the Department of Health to improve cancer diagnosis in England. A national initiative by the National Cancer Action Team provided all practices in England with a decision support tool based on the CAPER findings.

Prof Richard Neal, a researcher on the programme, spoke of further impacts: “Intangible ones [impacts] may be larger: at the same time as the programme ran, cancer survival figures and several other measures of cancer diagnosis improved – and continue to do so. We can never know for sure, but it is highly likely there are people alive today who would not have been so without this body of work.”

Dr Karen Kennedy, Director of the NCRI, says “The NCRI’s ability to bring together experts across a topic can result in the development of bold and ambitious research programmes like this – that lead to better diagnosis and care for people with cancer, and save lives.”

 

* The Early Diagnosis Subgroup is part of the NCRI Primary Care CSG

** The DISCOVERY programme ran from 2012 until June 2015, with results presented in publications through 2016.