A group representing some of the world's most innovative precision medicines companies is calling for Scotland to develop a strategy that delivers a step change in how NHS Scotland commissions genomic testing of people with cancer to improve patient outcomes and deliver efficiency savings for the health service.

The move could ensure people are routinely identified for medicines that will directly target genetic causes of their disease – ensuring patients receive the most suitable treatment and the NHS can use its resources to the greatest effect.

A report, which will be discussed for the first time at the Scottish Cancer Conference in Edinburgh today, makes a series of recommendations based on in-depth interviews with cancer clinicians, service managers, scientists and patient advocates.

The study was commissioned by the Scottish Precision Medicines Industry Group, formed by four pharmaceutical companies that are increasingly developing precision treatments for patients based on targeting particular genetic molecular characteristics of their illness (more detail below). These treatments can only be used when a ‘companion diagnostic’ test identifies that the genetic make-up of a patient’s cancer is suitable.

The Group is calling on  Scotland’s government, NHS, patient groups, academics and medicines industry to work together on a national approach that dovetails with the NHS Recovery Plan, the principles of Realistic Medicine, and the forthcoming 10-year Scottish cancer strategy. The report recommends that NHS Scotland:

• mandates equitable, comprehensive genomic testing appropriate to each cancer type as soon as a person is diagnosed;
• creates an early engagement and decision process that ensures companion diagnostic tests are in place for each new precision medicine when it is approved for use in Scotland by the Scottish Medicines Consortium (SMC);
• the current transformation of Scotland’s genomic laboratories is accompanied by investment to develop and support its expert workforce, underpinned by a single national data system, with capacity to embed the role of laboratories in global precision medicines clinical research.

The Scottish Government has told the Scottish Parliament it will provide further details on how it is transforming genomics in Scotland by the end of this year and will publish a genomics strategy next year.

Report author, John Macgill from health policy and communications consultancy Ettrickburn (on behalf of the Scottish Precision Medicines Group), says clinicians and patients welcome the Scottish Government’s commitments in this area but are concerned that things that could be done now are not happening:

“Across the 15 interviews a single theme emerged – patients must be able to have routine and equitable access to the broadest genomic testing appropriate to their cancer to ensure they can be appropriately considered for existing precision treatments and new ones as they become available.

“One patient told us that, had she had the full molecular information about her cancer from the start, she’d not have been given – or spent thousands of her own money on – treatments that were never going to have worked for her.

“Clinicians and service managers told us that genomic testing, costing less than a single CT scan, can save the NHS tens of thousands of pounds and avoid creating false hope, by showing in advance whether a treatment will work.

“Most immediately, we were told that there is a worrying mismatch, whereby SMC can accept a medicine for use in Scotland but NHS laboratories are not ready to do the diagnostic test needed to see if the treatment is appropriate for any patients. One patient advocate called this ‘a new lottery’.

“The Scottish Precision Medicines Industry Group welcomes the work being done by the Scottish Government and NHS to build genomics into the care of cancer patients and would ask that this work continues to be funded as a priority – and that things that can be done now aren’t put off until the strategy is published next summer.”

• The full white paper can be downloaded here.
• The summary of the white paper can be downloaded here.

Background: The Scottish Government has committed in its 2021 Programme for Government to ensure availability of companion diagnostics by investing in genetic labs and frontline genetics services ‘to embed genomics medicine into routine healthcare’.

In this context, the Scottish Precision Medicines Industry Group commissioned specialist health policy and communications consultancy Ettrickburn Limited to gather the insights of a mix of stakeholders on the current state of play and the opportunities – and steps required – to build the best genomics service for Scotland.

The Scottish Precision Medicines Industry Group is an informal interest group that brings together four pharmaceutical companies that are increasingly developing precision treatments for patients based on targeting particular genetic or molecular characteristics of their illness.

The companies are AstraZeneca UK, Eli Lilly & Company, Novartis UK and Roche UK.

Under the ABPI Code, Novartis agreed to act as the lead company coordinating inspection and review of all materials, including this report, and certifying all questions and all outputs as being non promotional.

Social Media Information:

The Scottish Cancer Conference @ScotCancerConf on Twitter, event hashtag #ScotCanConf, is led by the Cross Party Group on Cancer in the Scottish Parliament.

Direct quotes from people interviewed for the report:

"This service can be transformative in terms of healthcare.”   A patient advocate

“We're behind other comparable nations… without the test, the patient misses the opportunity.”  An oncologist

“Why would you not want to do a molecular test that would give you an idea whether the patient is likely to benefit from a really expensive drug?”   An oncologist

“Scotland needs a long term national strategy for genomics and precision medicines.”  Scottish Precision Medicines Industry Group

“Every patient’s cancer should routinely undergo a broad series of genomics tests on first diagnosis and progression.”  Scottish Precision Medicines Industry Group