by Andrea Ttofa
With a third of people waiting for a kidney transplant being black, Asian or minority ethnic and donation rates for living kidney donation and donation after death much lower than among the white population, NHS Blood and Transplant needed to find a way to engage, motivate and inspire action among these communities.
You’ll learn:
• Why campaigns need to represent the audiences they are targeting
• The importance of co-creation when working with diverse audiences
• The transformative impact of emotive storytelling
For me organ donation is something I support instinctively. As a child I saw stories on the TV about people who had their lives saved by an organ donor and they wowed me. Organ donation has always just seemed the obvious thing to do - I won’t need my organs when I’m gone.
But in my role as Head of Organ Donation Marketing at NHS Blood and Transplant, making organ donation relevant and driving action among people from different ethnic backgrounds and belief systems was not straightforward.
Shortage of BAME donors
The number of people donating after they die has doubled in the UK over the last decade and there have been improvements in the number of donors who are black, Asian or minority ethnic. But the proportion of donors from these communities significantly lags behind the patient need. One in five people who die waiting for a transplant each year are from black, Asian or minority ethnic backgrounds.
While organ donation and transplantation arguably punch above their weight in terms of the media coverage they generate, and we regularly see a direct link between stories appearing and spikes in people registering as organ donors, these stories don’t impact people across different ethnic groups in the same way.
But why?
Looking back a few years, most of the coverage would be in the mainstream media. People telling their stories were white. So were our spokespeople. Unsurprisingly, attempts to secure coverage on community radio stations or in community publications were rarely successful.
Understanding awareness levels, motivators and barriers
Surveys regularly tell us that black, Asian and minority ethnic people are less likely to be supportive of organ donation in principle and are less likely to be willing to donate. Probing deeper, we often hear fears that organ donation is against their culture or beliefs or that doctors won’t try to save them if they become ill.
Research shows there are low levels of awareness that someone’s ethnicity is important when it comes to matching a donor to recipient and that black and Asian patients wait longer than white patients for a kidney transplant.
In terms of motivators, there are a lot of similarities irrespective of ethnicity. The concepts of saving lives and thinking about whether you would want someone to save your loved one through donation if they needed a transplant - and then whether you should be willing to donate, are compelling arguments in favour of donating.
Making donation visible
It was clear that we needed to do something different to raise awareness levels among black, Asian and minority ethnic communities and inspire people to become organ donors.
There was a lack of trust in the messengers and we needed to make donation more visible, by working in partnership with individuals and organisations who would be listened to and trusted.
We needed to change who delivered the message to community leaders, black, Asian and minority ethnic medical staff, patients and donor families.
It’s a fine line between demonstrating the urgent need and coming across as blaming.
So, it was important that we engaged partner organisations as we developed the messaging. Their input on the messaging, language and tone was invaluable.
Funding community action
For a long time, there have been individuals and organisations doing great work to promote donation. But it wasn’t joined up and they didn’t necessarily feel supported by our organisation.
When the Government provided funding for a BAME organ donation campaign, that gave us the opportunity to do something different. Working with the National Black, Asian, Mixed Race and Minority Ethnic Transplant Alliance (the NBTA), we launched the BAME community investment scheme. This laid out criteria for community-led organisations to access small pots of money to promote donation.
In the first year of the scheme we funded 25 projects. Many of the projects were event or educationally led, and saw people hearing about donation from people from a similar background, whether this was doctors, faith leaders, patients or donor families.
Another positive was that regional and community media wanted to report on the work and the projects created content for the funded organisations’ social channels, helping to expand their reach and message. This meant the content we were sharing became more diverse.
Human stories
Telling emotional real stories about donation and transplantation has always sat at the heart of NHS Blood and Transplant’s media and social media efforts. But historically we hadn’t been able to tell many stories of black or Asian donors or transplant patients.
Telling real stories is essential to demonstrating how families feel about donating a loved one’s organs, to reassuring people about the process, and on the transplant side to showing the huge and positive impact a transplant can make to someone’s life and their family.
The number of deceased donors from black and Asian communities was small and their families didn’t necessarily want to share them. NHS Blood and Transplant also doesn’t manage the transplant list so identifying patients to share their stories was often a challenge.
As we developed stronger links with community-based organisations and hospital communications teams, they identified donor families and patients who were willing to tell their stories, and we worked collaboratively to tell them.
Reassuring about the donation process
As we know there is a level of misunderstanding about the donation process itself, we also wanted to work with healthcare professionals as trusted messengers.
Through our networks, we identified black and Asian intensive care doctors, nurses and transplant surgeons who would be willing to answer commonly asked questions and address myths and misconceptions. This gave us a wealth of content we could provide to other organisations to share on their own channels and they could be confident it was accurate.
An example of this is our work with the British Islamic Medical Association, who were brilliantly willing to use the opportunity of their national conference to work with us to create myth busting content and to show that there was support from among the Muslim medical community to raise awareness of donation.
We also engaged with faith organisations to ensure they understood the organ donation process and to address questions they had about it, as they were key to reassuring people in their communities around the permissibility of organ donation.
Saving lives
Each year over 4,000 people benefit from a life transforming organ transplant in the UK. But everyday someone still dies waiting for a transplant. It’s great that over the last few years we have seen some improvement in BAME donation rates. And I strongly believe that working collaboratively with individuals and organisations to educate people through trusted voices is an important way to improve these rates further and save more lives.
Andrea Ttofa joined Resuscitation Council UK in June 2020 as its Director of Engagement and Influencing.
Andrea worked at NHS Blood and Transplant from December 2012 to June 2020, where she was the Head of Organ Donation Marketing and prior to that, the organisation’s Head of Media and PR. Andrea was responsible for the public campaign to introduce the opt out organ donation system in England, which came into effect in May 2020.
Over the last 15 years, Andrea has held various communications, marketing and PR roles in the not for profit sector and NHS.
Twitter: @ormygirl
LinkedIn: linkedin.com/in/andrea-ttofa-91077010