For our World Sickle Cell Day episode of The G Word, Marie Nugent, Community Manager for the Diverse Data initiative at Genomics England, is joined by John James OBE, CEO of the Sickle Cell Society, and Suzannah Kinsella from the James Lind Alliance.
They discuss the new priority setting partnership for sickle cell and genomics, including the longer-term plan to engage communities to create space for learning and trust building, and the importance of the patient-voice in setting research agendas for the use of genomics in sickle cell disease.
By creating a 'top ten' for future research priorities set by patients, their carers, and their healthcare professionals using a trusted methodology, we aim to build trust and understanding across patients, healthcare and research to bring maximum benefit to patients through the newly developing technology that is genomic medicine in the health service.
You can read the transcript here: Research-priorities-for-sickle-cell-and-genomics.docx)
"It was a few years ago when I met the Chief Executive Office of Genomics England, and we had the first podcast about sickle cell. Why I remember it well is because I was arguing that why isn't there any action being taken by way of research and genomics for sickle cell... And so Marie, it was effectively a call to action. Here today talking about the Diverse Data, which is specific work to help us prioritise what the research priorities for sickle cell should be." - John James, OBE
You can also listen to the first podcast with John James and Chris Wigley).
