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New report calls for NHS to transform approach to genomic testing in cancer care

The latest report from Public Policy Projects (PPP) Cancer Care programme reveals that the transformational impact of genomic testing is being held back by fundamental issues regarding process and capacity.
  • The UK has long been at the forefront of genomic testing. However, onerous processes and a lack of understanding by clinicians is hampering uptake and limiting access to crucial benefits for patients.
  • Greater capacity across the genomics pathway would support improved access, including more pathology lab resource and more comprehensive implementation of technologies to support genomic analysis.
  • The lack of a single clinical trials database is impacting access to potentially life-saving clinical trials.
  • Experts have called for genomic testing for cancer patients to become as normalised and as straightforward as ordering a blood test.
  • As our understanding of genetic predispositions to cancer grows, genetic testing is increasingly important to allow early detection for family members.

Over the last two decades, the cost of genomic testing has fallen significantly, making whole genome sequencing and analysis possible for large numbers of people. Scientists now know about hundreds of genes that may predispose a person to cancer risk and precision medicines that target specific tumour mutations are becoming increasingly available to patients in the UK.

However, despite huge investments and the establishment of Genomic Laboratory Hubs across the country, there is still variation in access to genomic testing across the UK. PPP’s latest report finds that many clinicians do not fully understand the potential benefits that genomic testing offers to patients and that education is needed for clinicians to feel confident in advocating for genomic testing to their patients.

The report, Improving access to genomic testing and medicine for cancer: Boosting outcomes and reducing inequalities, presents the insight from experts from across the genomics ecosystem, including clinical oncologists, cancer alliance representatives, genomic laboratory hub leaders, academics, NHS leaders and more.

Even for clinicians that are well versed in genomics, the onerous nature of booking tests, difficulty in using the National Genomic Test Directory for Cancer and the pressures facing NHS healthcare professionals, are factors limiting the uptake of genomic testing. As one Genomics Expert Advisor says in the report: “There needs to be a point where a genomic test is a test like any of the tests, like a chest X-ray, a CT scan, or a blood test. By putting it on this incredible pedestal at the moment, you have shot yourself in the foot already, because by calling it a ‘special research test’, which requires four hours of clinicians’ time to tick all these boxes – and then the data can’t be used for anything – you’ve limited its potential.”

The report recommends overhauling the test directory and test ordering process, together with rolling out an education programme pitched at the correct level for clinicians. Another broad finding of the report is that limited capacity across the genomics testing pathway hampers the speed at which patients get results. The report argues that digital technologies should be harnessed to help clinicians read genomic results and screen out negative results faster.

Clinical trials are another key theme discussed in the report. The report finds that the lack of a centralised database for clinical trials is widening inequalities in access and is hindering scientific advancement and discovery. PPP recommends a centralised clinical trials system that automatically flags if a patient is eligible for a clinical trial based on their genomic results and allows the patient to easily and seamlessly access further information and opt in or out of clinical trials.

One genomics professor adds in the report: “One of the big issues [is that] we invest hugely in genomics, but we don’t capitalise on that data for recruiting patients to clinical trials. In the context of a centralised database, a decision support system would say if there were a clinical trial open today which your patient is eligible for.”

The report calls for a culture shift in genomic medicine across the NHS ecosystem and at every point in the genomics pathway. This requires education and further NICE guidance to improve awareness among healthcare professionals. It also requires the necessary infrastructure to support clinicians and allow scientists to best use data generated for population-level benefits, as well as individual outcomes gains. However, the report recognises that as understanding of genomics increases and technology becomes faster and cheaper, together with the UK’s ambition to remain at the helm of this innovation, these changes are inevitable.

Amgen have provided sponsorship to support the delivery of the PPP Cancer Care Programme. PPP retains editorial control across all policy programmes.

Commenting on the report, Dr Tony Patrikios, Executive Medical Director from Amgen UK said, “Rapid and easy access to genomic testing in cancer is crucial for delivering personalised, effective, and efficient healthcare, improving outcomes, and advancing our understanding and treatment of cancer. Equally important is ensuring that access to such testing is equitable for all patients. We must also work to ensure that the value of genomic testing is understood and embraced across all health systems, so that its benefits can be fully realised and integrated into standard cancer care.”

To view the report in full, [click here]

About Public Policy Projects

Public Policy Projects (PPP) is an organisation operating at the heart of health and life sciences policy delivery. This report is part of the Cancer Care programme which is designed to identify opportunities for improvements and transformation in cancer care. The programme convenes key stakeholders from primary and secondary care research, pharmacy, integrated care boards (ICB’s), industry representatives and other key stakeholders for focussed discussions across a series of roundtables and events. In 2023, PPP hosted this roundtable chaired by Parker Moss and attended by sector leaders and key stakeholders. This is one in a series of roundtable insights reports in the Cancer Care programme. The findings of this paper are based on these discussions, held under the Chatham House Rule, and have been supplemented with additional research by PPP. As such, it is not an exhaustive account of issues around access to genomic testing and medicine for cancer but, rather, a succinct reflection from a key group of stakeholders focusing on this topic.

Next Steps

For more information about PPP’s Cancer Care Programme, or to request interviews, please contact: Chris Rice, Director of Partnerships for Cancer Care and Life Sciences: 

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