“Faith is for doing good, faith gives you strength,” these words echoed throughout my childhood as my parents encouraged me to learn about Sikhism and about the importance of faith. I didn't appreciate at the time, the impact these words would have on my research career.

20 years ago, I was commissioned by the Kings Fund to undertake the first ever study in the UK to examine variations in transplant waiting lists among different South Asian communities, and to explore the potential reasons for this. Analysis of the transplant waiting lists showed that Black and Asian Minority Ethnic (BAME) communities were disproportionately over-represented. Current data shows that BAME communities make up 11% of the UK population, but 30% of the kidney transplant waiting list. At the same time, only 3.5% of registrations among people of known ethnicity, on the Organ Donor Register, are recorded as being from BAME communities. Interestingly, when speaking to people about what they knew about organ donation, the vast majority of people I interviewed had a lack of knowledge about organ donation. Importantly, many of the people I spoke to were keen to understand their faith's position regarding organ donation, as they perceived faith to be a major barrier to them signing on the organ donor register. I was puzzled by this finding, as my upbringing in a Sikh family harked back to my opening words; faith is for doing good things, and organ donation, which can save the lives of up to 9 people, is a good thing.

Over the next few years, I was fortunate enough to be commissioned to carry out a series of studies in the UK to build the knowledge-base regarding public views and attitudes towards organ donation. The issue of faith surfaced in all of the studies, but the research highlighted that the issues were quite complex. Faith is individual, faith is subject to interpretation, faith scriptures were written well before organ donation and transplantation became common medical procedures. For some people, faith is the very reason they choose to be on the organ donor register; for others, faith is one of the reasons they choose not to be on the organ donor register. Armed with all of this evidence, I knew that as a committed applied researcher, I had to find a way of utilising this research into practice.

The government of the day commissioned the Organ Donation Taskforce in 2007. I was privileged to have been appointed as a member. The work of the Taskforce enabled us to develop a specific Faith Work stream via which I met with a range of faith and belief leaders. These meetings revealed that - organ donation had not been on the radar for most faith communities; views on the position of faith and organ donation varied between faiths as well as within faiths; dialogue on the issue of faith and organ donation would be welcome; and that faith communities were keen to promote conversations about organ donation. This dialogue was taken forward by the UK Donation Ethics Committee for a number of years.

In 2013, NHS Blood and Transplant (NHSBT) took the bold decision of commissioning a Faith and Organ Donation Action Plan. They were faced with the continuing shortage of organ donors and a significant variation in organ donation consent rates, 61% among white families and only 33% among those from a BAME background. NHSBT and I recognized that for the Faith Action Plan to be successful, we would need to ensure that Faith leaders co-designed the plan. We organized a Faith and Organ Donation Summit, which saw leaders from multiple religions come together and input into the strategy – the first time, globally, any such event has taken place.

The Plan provides a 'route-map' of how the dialogue between faith and organ donation can be developed meaningfully and collaboratively to raise awareness that organ donation is an acceptable practice within most faiths. It also acknowledges that a 'one size fits all' approach will not work – messages must be tailored to target audiences and be information and persuasive if they are to succeed in altering their views of member of ethnic minority and faith communities.

Faith leaders and NHS Blood and Transplant are now working together to ensure the population can have informed conversations about organ donation. This collaborative approach will be useful in other countries where there are low consent rates to organ donation and enable greater understanding of the need for all sections of the population to discuss and consider organ donation. Importantly, faith is now recognized within NICE guidelines on organ donation and within UK ethical guidance. Faith communities are taking the initiative and organizing seminars and talks; a range of faith-based media outlets have also begun to profile the subject. All of these initiatives are welcome, and there's so much more to do so that regular conversations about organ donation become normal. Faith leaders can start these conversations amongst their communities. This will enable families to take more informed decisions as to whether organ donation is something that they would wish to consider.

The first ever Faith Action Plan aimed at tackling the global problem of low organ donation in BAME and faith communities has been published in the UK. Other countries grappling with the similar challenges are already utilising the Plan as a blueprint for developing their own faith engagement strategy. My faith has been restored and my parents' words remain true.

For further information or to speak to Professor Randhawa, please contact [email protected] or 07718 517196