On Friday 7 February we welcomed program staff, investigators and collaborators to London for our Annual Pan Program meeting. Here we introduce a key theme from the meeting and share what each of our speakers presented on.
Improving clinician understanding and management of risk
After lunch, we had an exciting range of talks covering the educational and resource needs for clinicians from primary care through to oncology and clinical genetics. The fundamental premise behind the talks was this: genomic medicine and genetic testing are becoming increasingly embedded into routine care and delivered by non-clinical genetics specialist. This requires education of care professionals and new resources to be made available for the wider clinical community to ensure safe and effective delivery of cancer genetics.
Dr Helen Hanson (St George’s) started the session with an overview of the CGCV work to deliver clinical guidelines for management of cancer genetic variants. Through the program, Helen and another clinician from Manchester, Dr Fiona Lalloo, have been given dedicated time to establish the priority areas for guideline development and work with a national ‘Clinical Guideline Group’ to develop NHS England approved guidelines. The priority areas have been established through a survey to regional genetics centres from across the UK and the team will firstly focus on developing guidelines for DICER1.
Following this, we were pleased to welcome the Royal College of General Practitioners’ Joint Clinical Champions in Genomics, Dr Imran Rafi and Dr Jude Hayward. They provided an overview of the ongoing work through the RCGP to facilitate adoption and diffuse knowledge around genomic medicine. This included policy statements, development of a genomics toolkit, and the release of educational resources such as webinar and podcast courses.
Imran and Jude also shared results of a survey completed with Health Education England that identified (i) how genomics issues present at GP practices, (ii) what skills and knowledge are required of GPs, and (iii) what ‘new’ issues/topics around genomic medicine do GPs require understanding of. It was also identified that key resources for GPs should be reactive resources that can be utilised within clinics and embedded into the IT systems already in use.
Dr Ellen Copson (Southampton) then demonstrated the evolving role of oncologists as genetic testing becomes part of routine cancer care. In addition to the diagnosis, ongoing monitoring and treatment of individuals with cancer, there is now an increased responsibility to have discussion around, and refer patients for, genetic testing, and translating testing results into something meaningful for patients and their treatment.
Ellen very clearly defined what the'needs are for oncologists around genetics, including: clear guidelines for testing; clinically useful turnaround times for testing results; clearly communicated results; and quick follow-up of patients by the clinical genomics service.
In the vain of improving communication and interpretation of genetic test results, researchers from the Winton Centre for Risk and Evidence Communication have been developing a template for genetic testing reports. Research Associate, Dr Gabe Recchia, demonstrated how a User-Centred Design approach has been utilised to involve patients and oncologists in the development of the report that will help both user groups to better understand the results of genetic tests and what it means for them.
To end the session, CGCV investigators Prof. Kate Tatton-Brown, Dr Katie Snape, and Dr Katherine Joekes (St George's NHS Trust) presented on the barriers to effective communication of genetic testing and results.
For example, lack of knowledge around genomics and issues with numeracy that may impact people’s perception and understanding of risk.
In response to this, the team from St George’s are developing both proactive ‘just in case’ and reactive ‘just in time’ resources for empowering the clinical community to have better understanding of, and be better equipped to communicate, cancer genetic risk.