Impact case study database

Focus on the individual

One obvious solution to the organ donation problem is for more people to agree to donate their organs after death, rather than having them cremated or buried. However, only half of the population in Scotland have signed up to be organ donors after death. Many initiatives to encourage more people to become organ donors focus on trying to provide persuasive factual information/evidence about the need for organ donation. Over the last 12 years, our research has consistently demonstrated that feelings/emotions such as discomfort at contemplating one’s own death, medical mistrust, fear of life-support machines being switched off prematurely etc. rather than facts/evidence are key deterrents to registration as an organ donor. Funded by the Scottish Government and working in partnership with NHS Blood & Transplant (NHSBT) UK, we conducted a very large randomised controlled trial with 14,500 members of the general public where we attempted to increase organ donation rates by focusing on feelings rather than facts. We targeted the feeling of regret, as many other studies have found that anticipating regret acts to significantly increase the desired health behaviour, e.g. cervical screening uptake. Participants randomised to the intervention arm were asked to consider possible future regret if they did not register as an organ donor. We used new verified registrations on the UK organ donor register as our primary outcome and paradoxically, found that relative to the control conditions, this anticipated regret intervention decreased organ donor registrations ( R1). While feelings/emotions are important barriers to organ donation, attempting to manipulate anticipated regret did not increase donation rates.

Focus on the family

A further possible target for intervention is to focus on the family rather than the individual. This is because the role of the next-of-kin is crucial and controversial. They have the power in a “soft opt-out system” (which will be used in Scotland and the rest of the UK) to overrule the wishes of the deceased potential organ donor. The family refusal rate in the UK is around 32% and is amongst the highest in Europe. We demonstrated that concerns about later regret for not agreeing to donation, disgust and the perceived benefits of donation were key determinants influencing the next-of-kin decision. Family members were much more likely to be willing to permit the donation of their loved one’s organs when the patient had actively registered to be an organ donor ( R2).

Focus on legislation

Rather than interventions that focus on targeting the individual or family, an alternative strategy adopted by many countries (e.g. Wales and England) has been to change to opt-out organ donation legislation. This system presumes consent to organ donation, “deemed consent” unless the individual actively opts-out. Automatically being on the organ donor register becomes the “default” position. However, there is significant concern that many people may react against this default legislative change as it can be perceived as automatic “state control” of one’s organs – removing the individual’s decision to choose to give. In the Netherlands, 30,000 people opted-out of the register the day after the opt-out law was introduced and 22% of the Scottish population have indicated that they intend to opt-out when the law changes. We have attempted to gain a better understanding of why so many people are motivated to opt-out by interviewing those who plan to do so. Key factors to emerge include heightened concern over the issue of presumed consent and government control, loss of autonomy, together with fears of criticism and potential stigma if one decides to opt-out ( R3). We then tested the impact of a “myth-correcting” intervention (as used on the current UK NHSBT organ donation website) for those who plan to opt-out in Scotland. This involved asking participants to answer questions about common myths and fears surrounding organ donation (e.g. “the doctors might turn off the life support machine before I am dead”) and we then provided corrective information. We found that this myth-correcting intervention reliably increased intention to donate – but only in those supportive of organ donation – it had the opposite effect in our key target group, those who plan to opt-out. Paradoxically the myth-correcting intervention seemed to evoke reactance and strengthen the resolve of those who plan to opt-out ( R4). As a result, we have now turned our attention to this key issue of reactance and systematically evaluated the type of text/narrative that could be used in public health campaigns to support a move to opt-out. In a randomised controlled trial with 1,350 members of the general public, we found that using high threat text (use of forceful adverbs and imperatives) coupled with a gain frame (focus on number of lives saved by transplant) significantly increased intentions to donate under opt-out, whereas a high threat/loss frame (focus on number of lives lost awaiting a transplant) reliably reduced intentions ( R5). This research identified optimal communication styles to reduce reactance and decrease the number of people who opt-out when the law is implemented.

Opt-in versus Opt-out – systematic review of the international evidence

Figure 1 [source: Table 5 in R6]: The impact of opt-out consent on organ donation rates (per million population; in 48 countries) 2000-2012. Countries with an opt-out system have a significantly higher rate of deceased donations.

In 2008, Gordon Brown, the then Prime Minister, publicly signalled, for the first time, support for an opt-out organ donation system as a way of improving the poor rates of organ donation in the UK. However, at the same time, the 2008 UK Organ Donation Taskforce concluded that “ no convincing evidence” was available to suggest that implementing an opt-out system would act to increase rates of donation and transplantation. The move to an opt-out system, at first glance, seems a very simple and logical solution, using the power of defaults (“nudge” approaches) to change behaviour. However, the evidence base supporting this strategy is conflicting and controversial e.g. in 1998 Brazil had to reverse their move to opt-out following public outcries about this move to “state ownership of organs” and Germany recently voted against adopting opt-out organ donation legislation. In an attempt to bring clarity to this key issue, we conducted the definitive systematic review of the international evidence on opt-in versus opt-out legislation using longitudinal data from 48 countries over a 13-year period. We used multi-level modelling controlling for all important confounders, including GDP, number of hospital beds, road traffic accident fatality rates etc. We found that internationally, a change to an opt-out policy resulted in significantly more deceased organ donations ( R6; Figure 1). This work has been cited extensively as key evidence supporting the move to opt-out legislation in Scotland and internationally.