Medical detection and treatment of cancer is improving as we learn more about its genetic causes. Today through national projects including 100,000 Genomes Project in the UK, scientists are exploring how sets of genes, called ‘genomes’, contribute to cancer.
The 100,000 project will sequence 100,000 genomes from around 70,000 NHS patients with cancer with the hope that this will lead to the development of new tests and treatments tailored to individual patients. Patients are involved in shaping the agendas of these large genomic research programmes, and patient data and support are crucial to their success.
Our understanding of patient and practitioner experience of these new approaches has, however, not kept pace with these developments. Research on ‘cancer and society in the 21st century’, led by Professor Anne Kerr and Professor Sarah Cunningham-Burley (Centre for Population Health Sciences, Edinburgh) examines the implications of genomic research for cancer for patients, their families, healthcare professionals and the wider public.
As part of this project, the research team in Leeds are working closely with Yorkshire and Humber NHC Genomic Medicine Centre project to explore and support the development of clinical and patient engagement with the 100,000 Genomes Project. From the early stage of our project, we have collaborated with colleagues at the Leeds Cancer Centre to develop our research protocol, which involves observations and interviews with patients and practitioners who are or might become involved with the 100,000 Genomes Project as it progresses. We are also developing an engagement strategy for our project which will feature short films and blogs about the perspectives and experiences of people involved with the 100,000 Genomes Project.
The researchers are working closely with the Clinical Director and Engagement and Training for the Yorkshire and Humber NHS Genomic Medicine Centre project to identify potential participants in our research and to feedback our emergent findings into the development and delivery of their strategies for clinical and patient engagement. By identifying patient and practitioner experiences and perspectives on the challenges and opportunities of genomic medicine we hope to be able to help make the 100,000 Genomes Project a success.
The project team has also been actively engaging with a wide array of cancer patients, cancer care and research communities in our research. The team tweet and blog regularly about the project as well as providing commentaries on cancer stories in the news at @CancerandSoc21C and on our project website. We also work closely with our own patient and public involvement panel to ensure that our study is relevant and meaningful to all.