The Human Tissue (Authorisation) (Scotland) Act 2019: qualitative research - October 2019 to January 2020

Annex B. Literature Review

Research on organ and tissue donation systems outside Scotland shows that alongside a transition to an opt-out authorisation system, infrastructure improvements appear to be important factors in contributing to increased organ donation and transplant rates. For example, Spain has one of the highest rates of organ donation in the world, which began to rise a decade after the implementation of an opt out authorisation system with the concurrent establishment of new infrastructure (Organ Donation Taskforce, 2008). Further evidence supporting the importance of infrastructure is illustrated by an examination of particular regions of Italy which found that these regions’ organ donation rates doubled after adopting an infrastructure model similar to the Spanish infrastructure (Willis, 2014). Additionally, an evaluation of the Austrian organ and tissue opt-out system claims that Austria’s largest increase in organ donation was driven by infrastructure changes, such as the use of full-time transplant coordinators (Rithalia et al., 2009).

Research has also found that medical staff play a particularly prominent role in increasing organ donation rates (Glasper, 2018). Research shows correlations between staff knowledge about, and attitudes toward organ donation, and organ and tissue donation rates within their country (Roels et al., 2010). Currently, no data exists with regards to these themes within the Scottish context. Data does however exist on these themes within the Welsh, and other international contexts. The Welsh Government commissioned a survey to explore the attitudes and awareness of NHS staff in Wales due to the transition to an opt-out authorisation system for donation (The Welsh Government, 2017). This evaluation was conducted pre and post implementation and examined the views of a wide range of NHS staff, not only those staff involved in donation, (which is the target group of this application). The Welsh evaluation found that 71% of NHS staff in Wales supported the change to opt-out before implementation of the legislation, which increased to 89% post implementation. In addition, staff awareness of this change was fairly high before implementation (89%) and increased to 96% post implementation. Several key findings from the Welsh impact evaluation highlighted how staff could be supported during opt-out infrastructure changes. It stressed the importance of ensuring that NHS staff have a clear and robust understanding and knowledge of the new donation opt out authorisation system, and highlighted that NHS staff benefited from further training which centred on themes such as skills in approaching the donation conversation with potential donor families, which is most pertinent for relevant for staff working in critical care areas.

International evidence also supports findings that training of key health service staff is important to support the change to, and implementation of, opt out. Research conducted in Belgian hospitals found that confidence, alongside knowledge of donation processes, is important in effectively communicating with families about the organ donation process and may lead to higher authorisation rates (Pelleriaux et al., 2008). Further, a Greek evaluation indicated that staff education for health service staff is key to gaining support for a change to an opt-out authorisation system within the public sector and increasing organ donation (Symvoulakis 2014). Similar research in Hungary tracked staff attitudes to, and knowledge of donation in an examination of medical staff training, concluding that education, donor management, and how to communicate with families should be part of the specialist training of health care professionals (Smudla et al., 2012). These findings corroborated earlier research on the important links between staff training, staff attitudes, family communication, and donation rates (Evanisko et al. 1998; Garcia et al. 2008; Muthny et al. 2006; Simpkin et al 2009). The international evidence demonstrates that staff support in form of knowledge and skills training for organ and tissue donation processes is more likely to achieve greater understanding of organ donation amongst families, and thus donation is more likely to be authorised. The evidence base highlights the importance of continuous training and education to support the implementation of an opt-out authorisation system for organ and tissue donation.

In summary, these bodies of research demonstrate the importance of infrastructure changes alongside donation opt-out across various European contexts in improving donation rates. They also show that the attitudes and knowledge of medical professionals play an important role in increasing donation rates. The findings from this body of research also demonstrate the importance of training shifting NHS staff’s attitudes toward, and knowledge of, donation processes, and that training can lead to improvements in overall donation rates. These findings demonstrate the importance of understanding the current donation process, specifically referral and authorisation processes, and infrastructure within Scotland, and knowledge and views of organ and tissue donation held by NHS staff members.

For further information, please refer to the June 2018 Scottish Government publication: Opt out organ donation: a rapid evidence review - gov.scot (www.gov.scot)