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Project aims to increase understanding, reduce stigma, and improve the quality of life of people living with sickle cell disease.

A yellow background with decorative images. In the top left hand corner is the logo for the Oxford Blood Group. In the top right hand corner is the logo for the University of Oxford. In the centre is written 'Racism and Sickle Cell Disorder: How race and racism impact quality of care for people in the SCD community and how we can change things for the better.'

Sickle Cell Disorder (SCD) is a genetically inherited condition affecting almost exclusively people of Black African and Afro-Caribbean origin.

In the light of the international Black Lives Matter movement, Drs Noémi Roy and Catriona Gilmour Hamilton hosted a series of workshops at Oxford University Hospitals NHS Foundation Trust to explore and address overt or unconscious racism towards sickle cell patients.

Critical to the success of the workshops was bringing together a core group to steer the process. This group included two patients, two doctors, two facilitators and two patient experience experts. They met several times to think through sensitive issues ahead of time, and to debrief after each event. Additionally, the workshop moderators met each participant 1:1 on Zoom before the group meetings, in order to build rapport and enable each participant to feel comfortable sharing their experiences during the workshops.

25 participants attended the workshops, representing SCD patients, community leaders, health professionals as well as medical students. 60-70% of the group identified as Black or ethnic minority. Over the three workshops, there were guided discussions which included sharing experiences and stories, highlighting challenging areas, identifying the most important challenges, and working on actions to follow up the discussions. Three distinct areas emerged for further activity, one relating to training of medical students about SCD and racism issues, a second to disseminate the findings of the workshops, for example at the UK Forum for Haemoglobinopathy Disorders in November, and third to continue to provide opportunities for individuals to share their stories through an ongoing podcast listening project.

Many of the participants reported that taking part in the workshops had been a positive experience for them. Several mentioned that they had found confidence to challenge behaviours and to advocate for better care for SCD patients.

“As a result of the workshops, I will be bold, be confident, be courageous – have the difficult conversations and tell my story as someone living with sickle cell and working in healthcare. Dream big!” said one participant.

Another participant reflected “I now have greater awareness of racism and the experiences of people of colour in the health service. I am maintaining my commitment to the power of stories”.

The group plans to meet in six months’ time to see what progress has been made. This project was supported by the University of Oxford’s PER Seed Fund supported by the ISSF.

To see the original announcement of this funding award, visit: https://www.imm.ox.ac.uk/news/msd-projects-awarded-public-engagement-seed-funding-2020-21

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