Improving equity of access to cancer clinical trials in Scotland

This report summarises the findings and recommendations of an Equity of Access Short Life Working Group. This is provided as a compilation of work package reports.

Executive Summary

The Scottish Government is committed to tackling health inequalities and providing access to the highest quality of care for all. This includes providing equitable access to care in clinical trials, which is an integral part of NHS cancer care.

The CMO Annual Report published in March 2021 stressed that 'We urgently need to address our health inequalities here in Scotland, which are the worst in western and central Europe'. It also acknowledged the 'sobering' report of Professor Sir Michael Marmot, Build Back Fairer, December 2020. A key finding of the latter was that 'to reduce health inequalities and build back fairer from the pandemic, multi-sector action from all levels of government is needed and we must create long-term policies which support equity'.

This finding equally applies to cancer clinical research, which is by far the biggest area of research in NHS Scotland, representing over 30% of the entire national portfolio. The size of the cancer portfolio reflects the overall prevalence of cancer, with citizens having a 1 in 2 chance of developing cancer during their lifetime[1], and the fast pace of product development and innovation. It also reflects the clinical community's commitment to delivering high-quality patient care through cancer research, as all patients benefit from being treated in research active hospitals [2] [3] [4]. Clinical trials also provide access to potentially lifesaving or life extending cancer treatments that are not yet available in standard of care. This can provide hope when standard treatment options have been exhausted.

Furthermore, clinical research plays a vital role in supporting the move towards precision medicine. Where our understanding of human biology, and the biology of cancer in the laboratory, is then translated into the development of new highly targeted therapies, which are then taken into clinical trials. These 'personalised' therapies are more likely to be effective as they are tailored to the individual characteristics of the patient and their specific cancer. Personalisation can also improve treatment outcomes and quality of life by sparing the patient the potentially harmful side effects of therapies which may be of limited value. Many personalised therapies developed in clinical trials ultimately become licensed products made available for standard use in the NHS ('standard of care').

Indeed, in cancer services, realistic medicine often relies on the ability to provide access to precision medicine. Precision Medicine uses the genetic profile of an individual and/or their disease to guide decisions about the prevention, diagnosis, and treatment of disease. Clinicians can then better understand individualised risks and benefits of treatment, and have well informed discussions with the patient about what matters to them (i.e. realistic medicine). This helps to improve quality of care for individuals, and by minimising interventions of limited individual value, capacity is optimised for all NHS patients who need time critical care. We will however see that lack of access to complex genomic testing is a key constraint. Equity of access to some treatments, in trials and standard of care, is affected as a consequence.

In the context of a continuing pandemic, in which large waiting lists have grown, this report notes there are several ways in which clinical research benefits overall NHS capacity. In addition to the benefits described above, we will see that a vibrant trials portfolio allows Scotland to better compete for talent by offering more attractive and rewarding careers. Increasing the overall proportion of cancer patients treated in trials also alleviates pressure on standard of care services by providing 'per patient', externally funded, treatment capacity. Optimising use of NHS funded capacity is especially important in services with rapidly growing demand, such as Systemic Anti-Cancer Therapy (SACT), with an underlying average growth rate of circa 10% per annum. Or radiotherapy, where novel hypo-fractionated techniques, developed and delivered in trials, reduce attendances, and provide highly cost-effective potential alternatives to SACT and surgery.

It follows that the more thinly stretched NHS capacity becomes, the more vital clinical research activities become for all cancer patients. Nevertheless, this report demonstrates that the clinical research community generally perceives a lack of engagement from NHS senior management, with clinical research often treated as 'an optional extra'. This experience was exacerbated during the COVID-19 pandemic when cancer and other non-COVID trials were in many cases paused or deprioritised.

When considering the pandemic's impact on Scotland's cancer portfolio, it quickly became clear to the NRS Cancer Resilience Group that continuity and speed of trials restarting varied considerably. If left unchecked this could potentially exacerbate pre-existing health inequalities in cancer care. Equally, it was recognised that the pandemic had caused rapid changes in the way organisations worked in partnership and used technology to provide remote access to care, thus providing a useful platform upon which to build.

An Equity of Access Short Life Working Group (EoA Group*) was therefore established to explore these issues. The group was asked to advise on how to mitigate these risks and realise opportunities for more equitable access to cutting edge therapies in clinical trials for the people of Scotland.

The following report summarises the findings and recommendations of the group. This is provided as a compilation of work package reports focusing on domains which impact on equity of access, including:

  • Opportunities and Challenges for Recovery of Scottish Cancer Research
  • Cancer Clinical Trials Data
  • Cancer Trials Staffing and Management
  • Key Performance Indicators
  • Financial Models
  • Use of Digital Technology
  • Access to Enhanced Genomic Testing
  • Partnership Working

The reports have been written by subject experts, designated as 'Work Package Leads', contributed to by the *EoA Group, and then edited and compiled into a single document by the EoA Group Chair.

*Membership of the EoA Group is provided in appendix 1.

Recommendations are detailed within work package sections and summarized in section 2 of this report. If these recommendations are acted upon, there would be wide ranging benefits for the people of Scotland, for NHS and academic institutions, and for the Scottish economy.

Taken together, this would form a significant body of work. Accordingly, the key recommendation of this report is that the contents be used to inform the development of a new Scottish Cancer Research Strategy.

NHS standard of care, diagnostics, and clinical trials services are intrinsically intertwined and co-dependent. Success will therefore hinge on close strategic alignment between Scottish research, service, and genomics strategies. The time is right to achieve this aim as the latter two strategies are also currently being refreshed and developed.

The Scottish Cancer Research Strategy should be co-designed by the various stakeholders in health, academia, government departments, industry, patient and public involvement (PPI) and the third sector. There should also be dedicated leadership of the development and delivery of this strategy, and highly coordinated partnerships, through which Scotland can fulfil its potential as a provider of world-class cancer care

Denise Calder, Equity of Access Group Chair

May 2022



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