On Wednesday 12th April the Genomics Education Programme (GEP) welcomed to Birmingham key representatives from Health Education England (HEE), NHS Genomic Medicine Centres (GMCs), university partners and patients to raise awareness of the GEP’s progress so far and to discuss the challenges ahead in embedding genomics into mainstream healthcare.
The 90+ attendees heard talks from Professor Ian Cumming, chief executive of Health Education England; Professor Sue Hill, chief scientific officer for England and NHS England’s SRO for the 100,000 Genomes Project; and Dr Anneke Seller, scientific director of the GEP. Each talk took a particular focus, but they all touched on the significant work being done to support, train and educate the workforce in genomics, as well as the obstacles that lie ahead. Full copies of the presentations are now available to download.
There was opportunity for questions from the floor, followed by a lively discussion session, where attendees were asked to consider the key priorities to ensure the delivery of workforce transformation in genomics. Responses ranged from creating a network of genomic champions who represent different sectors of the workforce, to embedding genomics into mandatory training and the greater use of clinical scenarios in workforce case studies.
Prior to the event, the education and training leads from each NHS GMC were invited to showcase their education activities and future priorities in poster form. These were displayed around the room and attendees were invited to view these during the lunch break. Copies of all the posters from the event can be downloaded here.
The patient view
During the afternoon session, attendees heard inspiring stories from two patient participants of the 100,000 Genomes Project. The first was from a breast cancer patient who, with the help of her consultant, completed a family history that revealed a prevalence of breast cancer in her female relatives. By taking part in the 100,000 Genomes Project, she is hoping to help future generations by identifying the gene responsible for the cancer in her family.
The second patient, Mike Hughes, has lived with two rare eye conditions since he was born. His first diagnosis of idiopathic congenital nystagmus came as a child, but the second of oculocutaneous albinism came about some 30 years later after a chance encounter with a genetic counsellor. For Mike, taking part in the 100,000 Genomes Project represents finding the final piece in the jigsaw in terms of his identity, understanding his conditions and being able to finally explain this to people.
As a final comment, both of our patient representatives expressed their thanks for all the work that is taking place within the NHS regarding genomics, and their desire to see this continued and extended across more areas.
During the final session of the day, all attendees were asked to consider two questions: how do we engage with key partners to drive workforce transformation in genomics, and what are the local and national actions for HEE?
It was another lively discussion, and a number of suggestions and actions were proposed. These included a ‘Genomics Summit’ involving the six main arm’s-length bodies; embedding the 100,000 Genomes Project onto the NIHR platform to encourage more participants; and the use of genomics champions within each NHS trust to signpost to different specialties.
The overall feedback from the day has been extremely positive, and the GEP and wider HEE team have a number of actions to focus on over the coming weeks. If you would like to learn more about genomics in healthcare, please view our courses and resources.