John James and Suzannah Kinsella: Research priorities for sickle cell and genomics

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.