'There’s massive global inequality around the supply of safe blood'

You're a member of the NHS Blood and Transplant (NHSBT) 'For the Assessment of Individual Risk' (FAIR) Steering group, where you head up the behavioural science research.

Yes, I have been involved in blood and organ donor research for over 30 years and have built a strong working relationship with NHS Blood and Transplant. In 2018 the Department of Health and Social Care requested a steering group be set up to explore changing UK policy regarding the blood donation rules for men who have sex with men. Before the policy change, men who have sex with men could not donate blood unless they abstained from sexual activity for three months. The new policy was to take a personalised approach based on assessing each individual's sexual behaviour, regardless of lifestyle, to ensure equality and diversity while maintaining blood safety.

We needed to identify a set of questions based on sexual behaviours and sexual health history, to be asked of everybody, to identify people engaging in higher-risk sexual activities. These questions also had to be acceptable, unlikely to put people off donating and be reliably reported. We had to consider people's ability to recall sexual behaviour, as well as the perceived and acceptable risks associated with the overall policy change. All this is critical to successful communications about the policy change.

We worked as part of a large interdisciplinary team, with the epidemiology evidence gathered and assessed by the epidemiology team at NHSBT and Public Health England, as it was at the time, with us providing the behavioural and social science evidence. This was drawn from surveys with donors, the general public, psychometric studies, focus groups and interviews with men who have sex with men, recipients of blood, donors, and NHSBT staff.

What did you find?

We were able to identify four behaviours which were good predictors of individual risk, generally acceptable, not off-putting and triangulated with the epidemiology evidence. Our recommendations were accepted and given ministerial approval by the then Minister for Health and became UK policy in December 2020. Since then, many countries around the world have followed our lead, including Canada, with the US recommending the change last month. Many other countries have changed lots, but other countries haven't as yet, but we're advising on how to go about doing it.

Following the policy changes, we have been involved in the post-implementation evaluation from a behavioural science side, looking to assess the number of men who have sex with men donating, perceptions of risk and awareness and understanding of the policy in recipients, donors, men who have sex with men, NHSBT staff and the general public. The simulations we did, the risk modelling – it's been borne out in what we're seeing, including more gay men donating blood, and safely.

How does that make you feel?

Immensely proud. We have been able to contribute to a policy change which enhances the equality, diversity and inclusivity of healthcare provision. We embedded psychology centrally into evidence-based policy, that other countries have followed. I have been working in this area for a long time, and it is rare to have such a far-reaching and real-world impact.

The FAIR project really does show how an interdisciplinary team can bring together complementary evidence using different methods to provide strong support. The support for policy change that involves people's behaviour needs psychology, and the FAIR project shows how that can be achieved to everyone's benefit.

What next?

Well, the initial FAIR project was just the start. With equality, diversity and inclusion at its core, we next looked at certain screening questions concerning having sex with people from areas of the world where the prevalence of HIV is higher, including Sub-Saharan Africa. Again, we provide behavioural evidence to complement the epidemiology, and were able to present evidence to recommend the removal of this question that was seen to lead to more Black people being deferred from donating. This also gained ministerial approval, and the question has now been removed. We have just completed FAIR 3, looking at organ donation rules, and further FAIR projects are ongoing and planned.

Why is blood donation so important?

The WHO designates blood and its products as an essential medicine. If there were no blood, many procedures in hospitals would stop or be much less effective. When most people think about blood, they think medical dramas like Casualty… somebody comes in, they've had a car crash, and staff run around shouting about crossmatching and so on. Yes, blood is needed to manage trauma and haemorrhage, yet blood and its products, such as factor eight, immunoglobins, and platelets, are used in a wide variety of treatments, including cancer, infection, and burns. It's vital to the survival of people with Sickle cell, Thalassaemia, and Haemophilia who require multiple transfusions across their lives. Indeed, multiple recipients of blood can't thank the generosity of donors enough – it not just saves their lives but gives them a life.

Is it psychologically ignored, just because, you know, 'yuk, blood'?

I don't think it is ignored… most people, I think, just have little idea where blood comes from, what it's used for, and how it gets from the arm of the donor to recipients in hospitals or communities. It's not on most people's minds: blood is just there if needed. People become aware when they or others they know need blood, such as in palliative care or chemotherapy. If you have Sickle Cell or Thalassaemia, for example, and you need multiple transfusions, you know about it.

Most people don't ever think about what it's needed for, but without blood, you haven't got a fully functioning health service. Indeed, three per cent of the eligible population donate blood at any one time, which is sufficient for supply to meet demand. In the UK, as in most of the global north, we operate a volunteer non-remunerated system, where much of our work focuses on the recruitment and retention of donors. There are barriers that may have a 'yuk' factor. Some people are afraid of needles or don't like the sight of blood, and so on. That said, many psychological factors are important for recruitment and retention. Fairness, reciprocity and trust are key to recruitment and the 'warm-glow' of giving for retention.

So how does the system operate in other areas?

The voluntary system is not the main collection system worldwide. In the global south, for example, the majority of blood comes from family replacements or paid donors. There's massive global inequality around the supply of safe blood. There's on average a 75 per cent shortfall in many counties in Africa, for example. While the World Health Organization strongly encourages systems that are 100 per cent volunteer, it is difficult to set that up everywhere.

Infrastructure issues aside, we are working to explore motivation, barriers, and strategies to encourage volunteer donors in the Global South and work closely with local services and a social enterprise organisation Action on Blood. Also, when thinking about the volunteer nature of blood donation, many blood services worldwide offer 'incentives' to donate. In the US, for example, you can enter raffles to win large prizes, get points you can redeem at stores and restaurants, health insurance, health checks and so on. So, we need to carefully think about what we mean by voluntary, depending on the relative size of these incentives.

So this links back to your work on altruism: that can only take us so far?

Altruism and cooperation are key to any voluntary system, even if these are some degree of incentive. We explore how different mechanisms of altruism – such as reciprocity, fairness, trust, moral emotions, warm-glow, and costly-signalling – underly decisions to donate once or more than once and how these can be translated into testable interventions. However, this is all based on a model of altruism on 'giving freely of a cost to yourself to benefit a stranger in need'. But we have to ask whether this idea of stranger altruism generalises.

Give me an alternative model.

In some communities, altruism may be based more on helping family and community. We have to consider the cultural variation in the meaning of altruism, especially if diversity and inclusivity are to be achieved with blood panels. We try to explore the variation in meaning through co-design and co-production with different communities to develop more meaningful and effective materials to encourage donors from diverse communities.

Indeed, co-design and co-production are central to our work and to the effectiveness of any campaign. Recently we have co-designed, co-produced and evaluated arts-based approaches to engage and encourage donors from the Black community. This has focused on message-free scripted narratives and films about blood donation with the aim of engaging people emotionally with blood donation. Interestingly we recently found that our community co-designed and produced films were a match for a Disney collaboration based on Black Panther. This really shows the power of co-design.

Blood and organ donation seems like a good model for understanding altruism.

Yes, we look at blood donation to address the major health issues I have talked about, but also because it's a very nice way of modelling what we do in the lab to explore altruism in a real-world context. Blood donors, in the voluntary system, make a costly gift of blood to help an anonymous stranger. This is like the dictator games we use to model altruism. 

Blood donation and deceased organ donation are also a public good, as everyone is entitled to a transfusion or transplant regardless of whether they have contributed. By exploring these real-world behaviours we can test theoretical models as well as help encourage more donors. We test these theoretical models using a variety of methods, including behavioural economic games. Games can be used to compare donors and non-donors in a case-control manner or to develop models of organ and blood donor behaviour in the lab. 

These models mean we can quickly test potential interventions before scaling them up at a policy level. Through this process, we have identified a new mechanism of altruism we term 'reluctant altruism' whereby people help, in our case, donate blood, because they do not trust others to help. This is interesting – usually, people help when they trust that others will also help. So, to identify a preference to help based on a lack of trust is both surprising and fascinating. It opens up new lines of research and potential for interventions.

Did the pandemic change how you thought about human behaviour?

People are extremely kind, cooperative and helpful, and this was seen in abundance during the pandemic and particularly around blood donation. When going out was potentially high-risk, people still donated blood. People also became convalescent plasma donors. These are people who had had Covid, and the antibodies they produced could be used as a potential treatment for others with Covid. These people turned up to donate plasma to help others with Covid. We showed that these donors were motivated by 'altruism from adversity'. The trauma they had experienced with Covid motivated them to help others in a similar situation. People who had been ill still came out to help others. So, no it didn't change what I thought about human behaviour, it reinforced it.

We have also been tracking people over the whole pandemic, asking about blood donor behaviour and assessing altruism and cooperation, trust, social distancing, and mask-wearing. This is part of the Covid tracker set up by Rory O'Connor and colleagues, to explore not only issues around mental health and coping across the pandemic but also prosociality and positive well-being. We are in the process of analysing these data to see if blood and organ donors respond differently to non-donors in terms of social distancing and mask-wearing.

Behavioural science and psychology really came to the fore in the pandemic. 

Yes, and I do think we can make a difference. But I would also argue we have to consider the difference we are trying to make and how. Maybe we can be more behavioural. For example, in the US, they had a Facebook campaign where people could update their status, saying they had just signed on to the organ donor register. This went to everybody in their network. People would be aware that friends had signed up, and this public endorsement encouraged others to follow suit. There's no message used here, it's completely behavioural, observing others helping and following.

We also need to think about using behavioural science to provide evidence to influence policy change, as well as individual change. By targeting evidence for overall policy rather than individual behaviour, you can have a large effect at a population level. This was essentially what we did with the FAIR projects.

So psychology can make a difference, but it needs to be embedded in that policy.

Psychology can make a difference both in terms of changing individual behaviours, which is important with respect to specific health and clinical needs, but can also be extremely important to help inform national policy by providing evidence about policies per se. In fact, these are not mutually exclusive. You can achieve policy change through individual messaging. We did this in Australia with blood donors. A big problem is getting people to go from one to two donations, to become repeat donors. So, we targeted a particular message at those who had made one donation in an RCT of just over 5,000 first-time donors, and we were able to increase the conversion rate by approximately 4 per cent. Based on this evidence, this message is now sent to all first-time donors in Australia.

I would also argue you don't have to have big changes. One of my favourite papers argues that we need to think about the effect size in relation to the size of the intervention and how difficult the outcome is to achieve. If your outcome is difficult to achieve, such as reducing mortality, a small effect size is important. The effect size of aspirin on preventing heart disease is small, but the number of lives that equates to is massive. So, if the campaign is targeted at a difficult-to-change behaviour, then a small change in that behaviour is a big step forward.

Do you think that approach stems from you being a chartered psychologist in the areas of both health and occupational? Do you think that leads you towards thinking about leadership, organisations, and how these things are structured?

Probably. It certainly gives you an awareness of the complexities and the recognition that you've got to be able to talk to people with different roles within organisations and understand how they are linked together. Also, I think it is critical to ensure that all work is fully co-designed and co-developed. Key stakeholders from all communities and organisations involved have to be included from inception to development, production and evaluation. This buy-in and ownership helps ensure that the right questions and approaches are taken, which will ultimately lead to successful behaviour and policy change.

That's the great thing about the FAIR project. We have medics, epidemiologists, sociologists, psychologists, ethicists, recipients, donors, marketing, hospitals, charities, health authorities, and lobbyists involved. We've just been down in Parliament, actually, showing MPs some films. We are co-developing and co-producing, with Black people, arts-based narrative film scripts and films to encourage more Black people to donate blood. These are now being evaluated back in the communities they're targeted at.