Sickle Cell Disease PPIE Activities
The Non-Malignant Haematology CTU delivered a multi part education and engagement project to educate individuals living with Sickle Cell Disease, about the significance of research, encourage their active participation and address the stigma surrounding clinical trials. The project involved a multidisciplinary team of professionals, community advocates and patients, including targeted engagement in clinical waiting areas and major events in March. This event will serve as a platform to bring together patients, families and carers and the wider community to participate in a day of education, art, discussions and immersive learning.
The clinic sessions offered patients an opportunity to learn about SCD research whilst waiting for their appointments.
Activities included:
- a mobile art exhibition showcasing lived experiences of SCD
- interactive microscope demonstrations to explore sickle and normal blood cells
- informal chats with clinicians, researchers and patient advocates
- distribution of tailored educational materials, flyers, and signposting to research studies (including IBHO and REDRESS)
The Pan-London event was held at Chelsea Football Club, bringing together 45 patients, families and carers, and 25 speakers and collaborators (including healthcare professionals, patients and patient advocates). The event featured a rich programme of talks, workshops and creative engagement.
We are proud of what has been achieved with this initial round of funding and are committed to building on the foundation laid. The learning from this experience is already informing future plans, and we are pleased to be continuing this work with ongoing support from our collaborators and the wider community.
