Genomics England: Sickle Cell Community Engagement

Championing improved opportunities for community-led and equitable research in Sickle Cell and the future of Genomics Research and Medicine

Who I worked with: Genomics England

Partners: Sickle Cell Society, James Lind Alliance, Bristol African Caribbean Expo

Project Description

Developed an engagement programme to support a sickle cell genomics research initiative at Genomics England.

This comprised of:

• Introducing the Diverse Data initiative to communities

• Establishing a Patient Voice Group to enable deeper involvement

• Developing an Expert Advisory Board

• Designing and overseeing cocreated PPIE project development and delivery across partners involved in research recruitment

• Leading a Priority Setting Partnership with Sickle Cell Society

Examples of Output

• Engaging with communities blog

• Sickle cell campaign

• Priority Setting Partnership for Sickle Cell Genomics

• Project outputs including patient facing materials for research, events, resources

Learnings and Insights

• Sickle cell is severely neglected by research and healthcare and has become a national priority

• Building trust with patients and the community is vital to the success of any new programmes

• Communities are ready to engage with research, organisations need to be prepared to engage with communities long term

• Sustainable community engagement and coproduction can build trust, understanding and deeper involvement of underrepresented communities