Using communications to increase the number of living kidney transplants in Scotland
About the author
Martin Flegg Chart.PR FCIPR is a PR professional specialising in internal communication. He is also a guest tutor and assessor for PR Academy on CIPR qualification courses.
This case study, by Daisy Bartlett, was prepared for a CIPR Professional PR Diploma assignment and has been edited for publication by Martin Flegg.
On 26 March 2021, Scotland moved to an opt out system of deceased organ and tissue donation.
This was a step forward to securing a long-term solution to increasing organ donation in the country. However, the role of living kidney donation would continue to play its part in achieving the Scottish Government’s Plan for Donation and Transplantation: 2021-2026.
The plan highlighted two major objectives around kidney transplantation:
- Within the medium term (3-5 years) any individual in Scotland who would benefit from kidney transplantation should have no or minimal time on dialysis.
- Living kidney donation to become the default option for first transplant for all patients requiring a kidney transplant.
To achieve these objectives, it would be essential to understand the different audiences that could be targeted with communications to encourage patients to explore options for a living donor as their first transplant.
The Scottish Government’s organ donation campaign brand, Organ Donation Scotland, was an opportunity to create effective communications to reach and influence these audiences to enable more patients to benefit from a living kidney donation and the Scottish Government to make progress towards achieving its objectives.
For most end-stage renal patients, a kidney from a living donor will normally offer the best outcomes for a person’s long-term health. On average 89% of recipients of a living donor transplant are still alive ten years post-transplant, compared to about 76-78% of patients who received a deceased donor transplant.
At the time of the research, the average cost of hospital-based dialysis for renal patients in the UK was estimated to be £35,000 per patient per year, while a kidney transplant was £17,000 per patient per transplant. It was therefore also essential, not only for the positive health outcomes, but also for the considerable savings to the NHS to consider the ways in which communication could help to increase the number of kidney transplants taking place in Scotland.
Communication has a significant role to play in supporting patients, as well as family, friends and other potential donors, to ensure the most suitable donor can be found for each patient on the waiting list.
The impact of COVID-19
The coronavirus pandemic caused major disruption to living kidney donation programmes across the UK. Living donor transplant numbers in Scotland were down 46%, from 104 in 2019/2020 to just 56 in 2020/21. However, by June 2021, NHS Blood and Transplant had confirmed that all living donor centres in the UK were open for business, and elective living donations could proceed.
This was welcome news for anyone waiting for a kidney transplant, and also reinforced that emergence from the pandemic was the right moment for Organ Donation Scotland to boost communications on this topic, to help restore transplants to their pre-COVID levels and ensure as many people as possible could benefit from this life-saving surgery.
During the pandemic, kidney transplants from deceased donors remained at similar levels to previous years due to the timely and urgent nature of these transplants. However, as the Scottish Government’s objective was for people to spend no, or minimal, time on dialysis, increasing living donations would be crucial to achieving this outcome.
To conduct a thorough situational analysis of the current challenges facing patients living with end-stage renal disease among different publics and stakeholders, and explore the role communications could play in helping promote living kidney donation as the best option for these patients, secondary research was conducted. This included:
- Quantitative research from organisations including Public Health Scotland, NHS Scotland and the Scottish Government, as well as comparable data sources from other regions that have aimed to increase living kidney donations, including NHS Blood and Transplant UK wide annual reports. This analysis was conducted to understand the relevant audiences to be targeted by a communications plan, and where resource could be best invested in order to maximise results.
- Qualitative research exploring what the barriers to living kidney donation are, for both end stage renal patients, as well as their friends, family and other potential donors, to develop insight into the key ways to increase living kidney donation.
- Using analytical tools, including SWOT (strengths, weaknesses, opportunities, threats) and PESTLE (political, economic, social, technological, legal, environmental) to identify the environment and potential risks to modifying the communications strategy around living kidney donation, as well as the opportunities and challenges to be aware of when planning.
- Profiling of key audiences to better understand motivations, and the level of communications investment required to reach them.
- Desktop research of campaigns within the sector and in other regions that successfully increased living kidney donations.
Key findings from the research
What motivates a donor?
Research by Stothers, Gourley and Liu found that improving knowledge of living kidney donation among friends and family of patients with kidney failure did not directly correlate with an increase in donations. Donors do not deliberate or research donation before making the commitment to donate. They are emotionally motivated by their loved one’s situation.
This research identified that it would be essential to uncover the differing motivations of people with a close connection to someone living with end-stage renal disease, and those donors who consider donating a kidney altruistically.
Respondents to an analysis of donor motivations found that the most successful route for increasing living kidney donations was with the initial approach to the donor being made by the recipient. This research identified the strongest motive for donation was the donor’s relief at the recipient’s improved health.
From this part of the situational analysis, it was concluded that any communication strategy should, in the first instance, be focused on targeting potential donors with a personal connection to a patient with kidney failure with emotive communications, and secondly educating them on the benefits of living kidney donation.
To further understand the different motivations for donating a kidney, stakeholder mapping and audience personas were identified to inform the communications strategy.
Different communities, different experiences
The Scottish population is the most supportive of organ donation within the UK, with 51% of Scots having opted-in to the NHS Organ Donor Register, compared to only 40% average across the four nations. There was therefore the potential for communications to build on this support and raise the profile of living kidney donation.
However, a report published by Kidney Research UK highlighted the disparity of experience in Black and South Asian communities living with kidney failure. People of these ethnicities are genetically pre-disposed to a number of conditions that lead to end-stage renal disease, and so are overrepresented on transplant waiting lists. At the time of the research these groups made up 35% of the UK’s kidney transplant waiting list, typically waiting 5 – 8 months longer than a Caucasian patient for a transplant.
Being Black and South Asian, or having a religion other than Christianity, are both associated with a greater degree of uncertainty around organ donation. However, there is no evidence that individuals in these groups hold strong beliefs against living kidney donation. Additionally, a 2019 Agroni Research study, commissioned by NHSBT, revealed that outreach work in this area was having an impact, with attitudes on donation within these communities shifting from negative to neutral since 2018.
These findings exposed an opportunity to target communications to these communities with easy-to-comprehend language, to increase education on the topic and explain the benefits of living donation for patients from these communities with renal conditions to successfully reduce the disparity in transplant waiting times. Further understanding of the barriers to donation within these communities, would also be essential to develop these communications.
According to research published in the Journal of Public Health, the biggest barriers in these communities were mistrust of medical professionals and the belief that you will not be resuscitated in an emergency if you carry a donor card. These barriers could be addressed through educational communication.
Finally, the research found that there is also often reluctance for donors to donate outside their communities, but with the promotion of directed living kidney donation to a loved one via the UK Living Kidney Sharing Scheme, this barrier could potentially be overcome.
Not a match? Not a problem!
The desk research identified the UK Living Kidney Sharing Scheme (UKLKSS). This helps people swap kidneys to find a match for their loved one. The scheme enables friends and family to help loved ones by swapping kidneys with other pairs in the same situation. It relies on everyone in the chain being a match, and can’t go ahead if one person is unable to find a match.
In January 2018, the scheme was changed to routinely add altruistic donors into it, helping to find rarer matches and trigger a chain of kidney transplants. In the first year of this change, living kidney transplants in the UK increased by 60%.
The research identified a clear opportunity to understand how the UKLKSS could be used within the communication strategy to increase living donor transplants. It was also noted that the matching algorithm within it was designed by Professor David Manlove, at the University of Glasgow, and engaging Scottish media with this local connection was a clear opportunity for the campaign to obtain earned media coverage.
Has anyone solved the living kidney transplant problem?
The research found that data and information on successful living kidney donation campaigns was limited. Further research is needed to determine what communication model might have the most success in increasing living kidney donation globally.
Iran is the only country that has successfully managed to increase living kidney donations to a point where there is no kidney transplant waiting list, and over 50% of patients with end-stage renal disease receive a living transplant. However, the single most important motivating factor there was introducing financial incentives for donation, something which could be considered ethically questionable and a practice which is prohibited by law in Scotland.
The situational analysis of the barriers to living kidney donation identified the need to segment and target key audiences for communications activity. Audiences with a specific interest in organ donation were mapped into five different ‘personas’ using audience persona theory. This enables the understanding and characterisation of key players in the sphere from a psychographic point of view. The theory is particularly relevant in considering a health issue that transcends geodemographic categorisation, but where the affected groups have a shared specific interest.
People living with end-stage renal disease (ESRD) who require, or will soon require, a kidney transplant and are willing to have a conversation with friends or family about them donating a kidney
People living with ESRD failure who require, or will soon require, a kidney transplant but who are unwilling to ask others to donate them a kidney. Generally older patients, who have reported greatest hesitancy at asking family members for organ, perceptions of selfishness, and unwilling to accept an organ from younger family members.
People living with ESRD who require, or will soon require, a kidney transplant, but are from black, South Asian communities who are more likely to progress faster towards kidney failure and less likely to receive a transplant. They are extremely reluctant to ask friends and family to consider donation. They are sceptical of government and medical professionals, but listen to faith leaders.
People who are in position to donate kidney. They must be in good health. This group can be split into two sub-categories:
Related Givers: those who are motivated by a close personal connection to a patient with end stage renal disease.
Altruistic Givers: those who have no personal connection but could be motivated to donate a kidney to someone in need, just looking for a way to give back.
Conclusions and recommendations
The research findings concluded that a number of high-level public relations objectives should be adopted to develop an effective communications strategy to increase living kidney donations.
- Increase conversations between end-stage renal patients and their family or friends who could be a potential match to donate.
- Create stakeholder resources to equip patients with the tools to facilitate this conversation distributed and tailored to each audience persona identified.
- Conduct further outreach into underrepresented communities in relation to organ donation to understand their barriers further, including looking at how to encourage participation of these communities in future communications activities
- Tailor communications to reach the different audiences identified – with a particular emphasis on end-stage renal patients themselves.
A number of shorter-term SMART (specific, measurable, achievable, realistic and timely) objectives were set to address the high-level objectives and support the Scottish Government’s wider objectives on increasing kidney transplantation.
- Creation of five educational video resources on living donation, one targeted at each identified audience, to be shared with invested partners, such as NHS Boards and health condition charities, as well as on social media by December 2021.
- Issuing monthly stakeholder notes to invested partners, with minimum of three example social media posts, until December 2021.
- Increase diversity within living donation case study pool – aiming for 35% of case studies to be from black or South Asian background to reflect the kidney transplant waiting list demographic by December 2022.
- Increase the number of followers on Twitter and Instagram by 10% by end of 2021.
After the completion of the research, COVID-19 continued to impact on the number of living donor kidney transplants being completed. This limited the opportunities to promote this to patients and donors, as the communications would have been about an option that may not have been available to them.
As noted in the situational analysis, living kidney donation is not usually an urgent procedure that has to happen quickly in the same circumstances that a deceased kidney transplant takes place.
This meant that some of the identified PR recommendations were not suitable for progression, but Organ Donation Scotland did take action to take some forward, adapting their PR approach to accommodate the changing circumstances of the pandemic.
This included shifting the focus from creating case studies about people who had recently had a kidney transplant within the previous 6 to 12 months, to those who received them long before that. In some cases, they included donors and recipients of transplanted organs from over 25 years ago, and who were still doing well. This was a tactic that, before the research was completed, would not have been considered as a viable or successful PR option, but which was well received by the Scottish press and media when used as part of a deceased organ donation campaign.
The objective to increase the diversity within the living donation case study pool was taken forward by work to create a more representative bank of case study materials.
By working with charity partners such as Kidney Research UK, after building strong relationships with them during an earlier “opt out” campaign, Organ Donation Scotland continue to work on improvements in this area, to create a larger bank.
Having the approach made by someone from the charity who was representative of the community, to try and find people who would be willing to speak about their experiences of organ donation, was successful and enabled the development of more representative case studies for use in future PR activities.
Daisy Bartlett – What I learnt from completing my assignment
“I work in an agency and before doing this course I had never done any practical PR study before, as my degree is in European Studies. Quite a lot of the people I work with at Smarts did PR and Marketing degrees, and so understanding more about the things they discuss has been really helpful and increased my confidence.
Overall, out of the whole PR Diploma course, I think the third unit has been the most valuable for me in terms of broadening out my understanding of the professional business practice aspects of PR. That’s what I was really keen to learn from the course. The classes and reading have been really informative for me in terms of thinking about what I want to get out of my career, where I am best placed to work within my agency and what my future goals might be.
In the past, I would often attempt to create PR plans by looking at what someone else in my agency had done before. Now, I have a much better understanding of why my colleagues’ plans were structured in that way and what the underlying thinking is to create a good PR plan.
I’ve enjoyed how the course has been very practical. There is obviously an academic side to things, but the models, theories and frameworks we’ve learnt about have been very easy to translate into practice.
I realised that I had used some of them before, but didn’t really know what they were and it has been really helpful to understand where they come from, why you use them and when it’s best to use them.
I do a lot of work with government clients and they use the OASIS planning model as a basis for their briefings to us. I never realised before that it was a planning model and I’ve learnt more about it on the course. I am now confidently able to use it to write my own PR briefs and create my own plans.
I’m so grateful that my agency has helped and supported me through this course. I would totally recommend it to more junior members of staff. It’s so helpful, especially if you haven’t come from a PR study background.”