University of Brighton leads drive to boost BAME student organ donation

With the help of funding from NHS Blood and Transplant (NHSBT), Simonne Weeks (Senior Lecturer in Biomedical Science) and Rebecca Craig (Senior Lecturer in Nursing) have overseen a project with students from Black, Asian, Mixed Heritage and Minority Ethnic (BAME) backgrounds to create online awareness initiatives to support students across the UK to register an informed choice to donate organs, and tell others.

For many patients seeking a transplant, the best match will come from a donor of the same ethnic background, but there is a significant shortage in Black, Asian and Minority Ethnic donors, particularly for kidneys. At present, BAME patients wait significantly longer on average than white people to receive an organ (743 days v 573 days). More blood donors are also needed from a Black background to provide treatments for patients with conditions like sickle cell disease.

Simonne Weeks

Since 20 May 2020, all adults in England are considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in an excluded group. But a change in law alone has not addressed misconceptions surrounding the topic and the crucial clinical need for more BAME donors. As the number of donors making a registered informed choice increases and more families are left certain of their loved ones wishes, the more likely the long wait on transplant lists for BAME recipients and others will reduce.

Organ Donation Week (20-26 September) provides a timely opportunity for the Brighton project to improve on the chronic organ shortage for BAME patients, and also tackle wider myths around organ donation. Among topics highlighted on the campaign's Instagram page are the idea that only young and healthy people can be donors, or that there are religious prohibitions on donating - plus the fear that doctors would try less to save the life of someone registered as an organ donor.

Dishani Arulampalam, a third year Biomedical Science student and researcher working on the project, said: “These conversations were stimulated within my family due to the opt-out system that was brought in last year. From this experience, what I have realised is the importance of communication to understand the value of organ donation”.

Vejeeva Jeevananthan, another third year Biomedical Science and researcher, said: “The facts are staggering about the lack of BAME donors and finding someone suitable. I would like to raise awareness and start a donation conversation by presenting information with statistics, the actual process and discuss personal views that may prevent a BAME member to opt-in. By having an informative open discussion, someone who was once doubtful due to misconceptions or lack of awareness may become a donor and help save lives.”

Simonne Weeks said: “Our previous NHSBT-funded project enabled 205 conversations about organ donation. The impact of the education intervention showed 79% of students were ‘likely to register to be an organ donor after the event’ and 74% responded they were ‘likely to talk about organ donation to a friend/family member’. “

Simonne also previously created Blood Culture, a groundbreaking bio-medical thriller series on YouTube exploring 21st century anxieties around harvesting of personal data, exploitation, and the pervasiveness of corporate control in our everyday lives. On its April 2017 release, it became the top arts or drama podcast in the UK, knocking The Archers off its usual top spot!

Read more about the Brighton Donor Research project, complemented by Twitter updates.