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.

Section 2: Summary of Recommendations

WP-1 Opportunities and challenges for recovery of Scottish cancer research

  • Produce and implement a Scottish Cancer Research Strategy which closely aligns with the refreshed national Cancer Strategy, and the developing national Genomics Strategy. This should be co-designed by the various stakeholders in academia, government, health, industry, patient and public involvement (PPI) and the third sector.

WP-2 Cancer Clinical Trials Data

  • Develop a standardised suite of performance measures for the Clinical Research Community, and simple key performance indicators (KPIs) for boards, should be agreed as part of a wider Scottish Cancer Research Strategy.
  • Articulate the infrastructure requirements (staffing, systems and system integration) to provide the clinical research community with data necessary for monitoring of equity of access and other key performance metrics on an ongoing basis.
  • Provide a baseline assessment of performance should be undertaken when Scotland's 2022 Census data are available
  • Consider use of performance benchmarking tools to provide visibility of how regional and national performance compares with other areas. Options to consider include the National Institute for Health Research's (NIHR) INCLUDE Tool: Better Healthcare Through More Inclusive Research.

WP-3 Cancer Trials Staffing and Management

  • Scope the number of academic honorary contracts that support cancer research to ensure that this dependency is visible and understood
  • Centrally fund essential radiotherapy clinical trials capacity. Resource requirements should be confirmed separately by the national Radiotherapy Management Group.
  • All oncologists and haemato-oncologists should be allocated at least one dedicated research DCC session within a standard 10 PA job plan.
  • Consider national infrastructure support for diagnostics and aseptic pharmacy
  • Fund sessions for the 3 regional clinical leads to support each node, and matched senior management sessions to support the national cancer research champion.
  • Develop a national Senior Clinical Research Fellowship to rapidly build essential senior medical capacity for standard of care and cancer trials.
  • Review how standard care pathways can be effectively established to map new hub and spoke staff training and service model to support cancer trial delivery
  • Ensure the national NRS service structure has a proportionate focus on cancer given the size of the national trials portfolio that this represents. This should include consideration of a dedicated cancer fund for the NRS Fellowship Programme
  • Provide a package of training and support for NHS managers and ensure the requirement to support trials is built into job descriptions and service planning.
  • Introduce Key Performance Indicators for access to care in trials

WP-4 Key Performance Indicators

  • Monitor performance in provision of care in both standard of care and trials settings.
  • Adopt KPIs for use across NHS Scotland, and NHS Research Scotland Central Management Team to report board level performance at regular intervals.

WP-5 Finance

  • As part of the development of a Scottish Cancer Research Strategy, create a focus group to address the recommendations of this work package.
  • Review and improve study costing processes
  • Develop standard Scotland-wide approaches to capture drug savings and other non-financial benefits of clinical research
  • Identify and address areas where reliance on charitable funding may affect resilience and continuity of research services.
  • Facilitate mechanisms to enable local reinvestment of trial income, savings and core funding to feed into service design.
  • Further develop the "One Scotland" model to reduce the cost of additional site setup, and enable equitable study placement, including development of "split-site" models
  • Develop better models for transferring funds between NHS bodies.

WP-6 Digital technology

  • Additional fields in EDGE should be set as mandatory fields by all cancer EDGE administrators across Scotland. This minimum dataset should be defined through stakeholder discussions.
  • Define a minimum dataset and definitions of use for key items of trial information such as dates and status that should be populated across Scotland, this will facilitate use by NRS, the Networks and R&Ds.
  • The Cancer Network Managers work together with EDGE to set up the background work needed to achieve this partnership level reporting access.
  • The users then need to be advised as to the fields they need to be completing to keep this information in real-time.
  • Evaluation of using EDGE as a finance tool between research staff and R&D staff across cancer trials in Scotland to ascertain if it should be implemented by all Health Board R&Ds and how it should best be implemented to achieve full benefit and reduce human error.
  • Drug cost avoidance needs to be calculated across all CTIMP trials for cancer at each Health Board as a powerful tool to demonstrate the benefit of trials to health board budgets.
  • The timesaving tools developed by Lothian need to be rolled out to all EDGE users to increase efficiency. Even with these timesaving tools extra resource in the form of local research staff should be assessed to determine to provide full support of this extra work.
  • Learning from support departments that have successfully used EDGE should be shared nationally to explore developing beneficial likewise solutions across the country.
  • The use of EDGE across the 5 cancer centres warrants a role for national service support.
  • Reduce manual manipulation to process recruitment data for ReDA and CPMS, either by the direct LPMS upload from EDGE to CPMS or have a way to auto-manipulating the data from EDGE to feed into ReDA which then uploads to CPMS.
  • A wider review of the LPMS/research governance management systems needs to be undertaken in Scotland to evaluate the value of having one or multiple systems.

WP-7 Access to Enhanced Genomic Testing

  • Cover a broad panel of genes required for SMC approved medicines and including targets currently under exploration in early-phase trials and targets with promising pre-clinical data.
  • Consider the need for more complex tests in certain circumstances (HRD testing, fusions, structural variation, whole genome sequencing).
  • Build capacity, such that resource is available for research and development within the genomics labs, to allow evolution of testing in line with new targets for cancer therapies.
  • Develop an attractive training pathway for genomics-focussed clinical scientists and offer multiple career progression options after qualification.
  • Build capacity in services required to support tissue testing including pathology, biorepository, tissue transportation.
  • Consider the impact of expanded somatic genomic testing on clinical genetic services.
  • Develop IT systems and governance systems that provide sufficient and secure storage of genomic data and that can provide controlled access to genomics data and associated clinical outcome data to facilitate translational research projects.
  • Establish the National Molecular Tumour Board to allow discussion of complex molecular testing results and consideration of clinical implications.
  • Align a programme of education to the new strategy to improve genomic literacy across the health service but particularly within oncology, radiology (understanding tissue requirements for molecular testing), surgery, medical specialities.

WP-8 Partnership Working

  • Develop national trials register with regular out puts circulated to encourage or expand recruitment circulated nationwide.
  • Develop a plan to provide vas much care as possible in local centres, through coordinated and resourced multicentre collaborations, and use of technologies such as NearMe, ProKnow and other Radiotherapy picture/patient archiving and communication systems.
  • Use NCRI Networks - NCRI to provide a central hub to get involved with the work of the NCRI Groups (formerly CSG's) with regular two way feedback between NCRI and wider clinical research community
  • Radiology, Radiotherapy and laboratories should be nationally accredited. Patients would therefore be able to engage in trials in larger centres and be able to get screening and follow-up investigations locally.
  • Scotland operates a generic review process that aims to streamline and reduce duplication of work. The generic reviewers are currently overwhelmed due to restart and recovery pressures therefore a review is required to identify additional resource. Education is required to inform investigators of processes to optimise the current system.
  • Increase the number of research sessions across the country in all cancer centres to build a network of clinicians to coordinate research. Clinicians, nurses, physicists, radiographers and allied health care professionals who are funded to engage in research should also develop and support national networks to ensure equity of trials.
  • Build strong highly coordinated strategic partnerships across the whole research community, including academia, NHS, industry and third sector requires dedicated support and focus as part of a cohesive Scottish Cancer Research Strategy.



Back to top