In October 2019, with the support of ASCAT, EuroBloodNet and Oxford Blood Group, 30 people with sickle cell disease from 13 different countries met together in London at the ASCAT 2019 conference.
Over the course of a morning, each person came up with ideas about what they think needs to be improved for patients with sickle cell disease all over the world. Together, we then grouped these into themes, and then into individual ‘research questions’- there were 40 in total.
Each person was then handed out a virtual “100 million dollars” in the form of 10 post-it notes- each one ‘worth’ 10 million dollars. Everyone then chose which project they would fund. At the end of the exercise, the projects were ranked in order of popularity, coming up with the “Top 10” research priorities.
At the end of the exercise, some of the patients presented the methodology and the findings back to the plenary conference. The reaction of the audience was one of deep respect and amazement. A recognition from the clinical teams that these issues had been selected by those with lived experience of the condition, and a real desire to ensure that the topics highlighted would receive better attention.
As for the group, we have decided to set up this blog together. Please feel free to send us text and photos which we will post- let us know how you have spread the word about the Top 10. Have you spoken to your clinican about this? Presented it at a meeting? What were the reactions? Where should we go from here?