P62
INCREASING ORGAN DONATION AWARENESS AMONGST BLACK, ASIAN AND MINORITY
ETHNIC COMMUNITIES
Neerja Jain & Peter Storey
Kidney Research UK
Problem: Kidney failure is up to five times more common in people from Black, Asian and minority ethnic
(BAME) communities. These patients also have to wait up to twice as long for a transplant due to a shortage
of BAME organ donors. Although just 11% of the UK population is made up of people from BAME
communities, this same group accounts for 32 % of all patients on the kidney transplant waiting list. Although
in general, 30% of families refuse permission to donate, this figure rises to 70% for BAME families.
Purpose: In this abstract, we describe the methods we have employed to engage with people in BAME
communities to raise awareness of kidney disease risk and organ donation and to overcome the barriers to
donation.
Design: We used our award winning and proven Peer Educator(PE) model. PEs are people from the targeted
community who are recruited and trained to engage with members of their community. They have an empathy
with the target groups in terms of culture, religion and language and engage with groups at both special
meetings and pre-arranged major events. These individuals do not need to have any prior knowledge or
experience, but being highly motivated to be a team member is essential. All training courses are at accredited
standards, equivalent to either an A level or a 1st year undergraduate. We have not only developed a structure
which enables us to deploy the model in a sustainable way, but which can also be adapted to meet the specific
requirements for both gender and age which are key to achieving behavioural change. We have developed and
adapted written and DVD resources to support the PEs in their work.
Findings: Across all programmes, we have trained 120 PEs, reached over 25,000 ‘at risk’ people, and, in the
organ donation awareness projects, more than 2,500 have signed the ODR, 136 at one event alone. The model
was also used to disseminate the findings of a previous research study on attitudinal barriers to organ
donation; this work led to an award from the Association of Medical Research Charities (AMRC). This
initiative is helping to build social capital, e.g. a young PE called Abdul says: “For the first time in my life, I
feel like I’m making my family feel proud…..”. He went onto full time education. Recognising the need for
sustainability and greater impact, we are effectively engaging more strategically with local and national key
religious and policy leaders to help champion and sustain our work.
Conclusion: The model has been found to be a culturally sensitive, flexible and highly adaptable approach to
addressing health and organ donation issues. It can address early disease detection, prevention, management
of risk factors, end-of-life issues and organ donation. It has been well evaluated in the area of organ donation
and the intent is to continue to build on our 10+ years of experience. The work is ongoing and the session will
explore current projects.
Relevance:The Peer Educator model, being highly adaptable, has even more potential to be deployed in a
range of kidney and other health scenarios. This would again involve training motivated and able members of
the target group in a specific aspect of the issue at hand. Then providing them with initial support and
resources, these PEs can access and influence the so called “seldom seen, seldom heard” communities in order
to address health inequalities, both in the medium and the longer term. This will be especially pertinent as the
proportion of BAME communities continues to increase in the UK.