New report calls for greater Government investment in NHS Genomic Medicine Service

A new report from Future Health (Genomics Report – Final 200624 DESIGN),  sponsored by Johnson & Johnson, calls for greater Government investment to increase the capacity of the NHS Genomic Medicine Service and deliver improved turnaround times for diagnostic tests for patients waiting for a cancer diagnosis.

The NHS Genomic Medicine Service aims to harness the power of genomic technology to improve the diagnosis and treatment of NHS patients in important clinical areas including cancer and rare diseases. The service is delivered through 7 regional Genomic Laboratory Hubs (GLHs). The report finds that whilst the number of tests conducted across the GLHs is increasing, there is evidence of regional variation in access to tests, turnaround times for tests and challenges in capacity building.

Nearly six years on from the launch of the service by then Secretary of State for Health and Social Care Matt Hancock, the main findings of the report are:

• There are increasing numbers of genomic test available to patients – the number of approved tests on the National Genomic Test Directory is increasing. The number of approved tests for solid tumour cancers has increased by 26% since 2021
• Testing capacity is growing – there is evidence that testing capacity within the NHS Genomic Medicine Service is growing. The report notes a 13.5% increase in overall genomic tests and a 22% rise in cancer tests in six months
• There are regional variations in capacity – the volume of testing per population served by each GLH varies. North Thames GLH is conducting the highest estimated number of genomic tests, 174 per 100,000 population each month. By contrast the East and South East GLHs are carrying out the fewest, 107 and 109 estimated tests per 100,000 population respectively each month
• The system is facing capacity pressures – based on recent growth in testing, the service is on course to deliver 400,000 solid tumour cancer tests a year by the end of 2025. Where such capacity to deliver will come from is unclear

It is not possible to fully assess the performance of the NHS Genomic Medicine Service against national targets for turnaround times for genomic tests as the data is not published. However correspondence within the service and regional data published by GLHs shows a series of pressures and challenges facing the system in meeting national turnaround time targets. The North West GLH notes on its website that ‘following the recent introduction of new elements of the test directory a number of services are reporting results outside of….. guidelines.’[1] In June 2023 East GLH noted that there would be delays to the Inherited Cancer genomic testing service due to ‘ongoing pressures across our genomic services and increases in testing volume.’[2] In November 2023 a letter to GLH users in the North East and Yorkshire GLH cited challenges around national and local reconfiguration and staffing levels as the source of ongoing delays to turnaround times[3]

Delays to turnaround times come with a clinical and patient cost – slower turnaround times for cancer patients, result in delays to diagnosis which in turn lead to poorer outcomes.

The report finds that progress has been made on the priorities set out within NHS England’s Accelerating Genomic Medicine in the NHS strategy. Of the five commitments made within the first year of the strategy, most have progressed to some extent. Genomic Networks of Excellence have been established, a training academy set-up, integrated governance models and patient and public forums built. However a genomics informatics implementation plan has not been published and in some areas such as patient and public involvement and the operation of governance arrangements it is difficult to appraise the success or otherwise of efforts to date. In other areas such as the Genomics Training Academy and Networks of Excellence it is too early to make a judgement on their impact.

The report sets out twelve recommendations aimed at increasing the capacity of the service and modernising it. They include:

Funding – A new Government should prioritise investment in the NHS Genomic Medicine Service to increase capacity. In particular using money for the NHS Productivity Plan in the 2024 Budget to upgrade the IT and data capability of the service

Performance – NHS England should publish a monthly performance dashboard for the Genomic Medicine Service covering data across the full range of genomic tests, including the number of tests and turnaround times

Capacity – NHS England should explore new contracting and funding arrangements to support NHS GLHs in increasing genomic testing capacity

Pathways – NHS England should work with partners including the medical royal colleges, professional bodies and NICE to ensure that guidelines for major cancer pathways are regularly updated to reflect the latest evidence on genomic testing.

Richard Sloggett, Programme Director at the Future Health Research Centre, former Special Adviser at the Department of Health and Social Care and report author said: “Nearly six years after it first launched there are positive signs that the NHS Genomic Medicine Service is increasing both the number and range of genomic tests available for patients.

However in making these strides, there are signs of a service – like the wider NHS of which it is a part- coming under pressure. It is difficult to gauge an exact picture of how such pressures are playing out both nationally and regionally but where data is available on volumes and turnaround times for tests there appears to be regional variation and certain hubs are unable to meet national turnaround times. Slower turnaround times for cancer patients result in later diagnoses and poorer outcomes. Our new research puts forward constructive ideas and proposals for addressing some of these challenges, through new investment, performance monitoring and capacity building.’

An infographic summary of the report is available here: Genomics-Infographic FINAL DESIGN 200624

[1] https://mft.nhs.uk/nwglh/quality/laboratory-test-service-turnaround-times/

[2] https://buckup-cuh-production.s3.amazonaws.com/documents/EastGLH_Letter_Inherited_Cancer_Delays_June2023.pdf

[3] https://www.leedsth.nhs.uk/a-z-of-services/the-leeds-genetics-laboratory/