Organ and tissue donation and transplantation: analysis of consultation responses

4.The current opt in system (Q2)

4.1 As well as considering the possibility of introducing a soft opt out system, the consultation paper noted that keeping the current opt in system remained an option. In that context, Question 2 asked respondents about changes which might be made to the current opt in system to increase the number of organs available for transplant:

Question 2: Are there any changes you would make to the current opt in authorisation system, other than moving to an opt out system?

4.2 Altogether 455 respondents (420 individuals and 35 organisations) replied to Question 2. In 100 cases (just over a fifth of those who replied), the respondent simply answered 'no' or 'none'. In the remaining 355 responses, comments focused on the following main themes: taking account of the views of family members; initiatives within the health service to increase donations; encouraging individuals to sign-up to the ODR; promotion and advertising of organ donation; and incentives for becoming an organ donor. The first of these themes - that of taking account of the views of family members - is discussed in the following chapter ( Chapter 5) along with related comments made in response to Question 3 which focused on situations where an individual has stated their wishes to be an organ donor, but the donation is opposed by family members. The other themes are discussed below, as follows:

• Pursuing initiatives within the health service to increase donations: Respondents suggested a wide range of actions which might be pursued within the health service to increase successful donations. These included providing additional specialist staff and / or appropriate training, information and support for all staff; ensuring appropriate practices and protocols were in place in healthcare settings to allow organs to be considered for donation; ensuring best practice in advising and supporting families in potential donation situations; developing and investing in Intensive Care Unit facilities and technology to support the viability of organ donation; making the donation pathway more efficient; and exploring options for widening the criteria for acceptable organs.
• Taking active steps to encourage sign-up to the ODR by individuals: Respondents often thought a more proactive approach to encouraging sign up to the ODR should be pursued. They suggested: (i) providing opportunities to sign up to the ODR in a range of contexts - e.g. via GPs, at blood donation sessions, at health screening appointments, at pharmacies, or as part of interactions with other public or private agencies; and (ii) taking a more direct approach to inviting people to sign up by, for example, contacting all young people directly as they turn 16.
• Increasing promotion and advertising of organ donation: Respondents frequently highlighted the importance of increased and ongoing advertising and promotion through a wide range of channels - generally, and in relation to particular sub-groups (e.g. young people, religious and ethnic minority communities) - as a way of encouraging discussion within families and across society more widely, bringing about a change in attitudes, and increasing ODR sign-up. The introduction of education on organ donation in schools was endorsed. It was suggested that communication campaigns might make use of social media and routine healthcare correspondence, and might emphasise good news stories, or remind people that they might need a transplant one day.
• Improving information on organ donation and transplantation: Some respondents thought that improved information was required so that people were able to make a properly informed decision about whether they wished to be an organ donor. It was suggested that information should be provided in user-friendly non-technical language, and should explain the various options open to people in becoming a donor including the option to opt out, what happens during the donation and transplantation process, and how and where to join the ODR.
• Administrative improvements: Respondents thought it should be easier for people to join the ODR, and to check and update their registration status (e.g. online, via app, or by other offline means). They also suggested that a person's ODR status should be readily accessible to healthcare staff with information held on a central database or routinely recorded in an individual's medical records.
• Providing incentives to becoming a donor: In a small number of cases, individual respondents suggested that 'incentives' might be introduced to encourage more people to sign up to become organ donors. These suggestions included making sign-up to the ODR a condition for receiving an organ; allowing people to prioritise their own family as organ recipients, or to indicate preferences as to who might benefit from their organs; or providing funeral funding for organ donors.

4.3 However, it is worth noting that most of the recommended actions above, excluding the points covered in the final bullet point, are either already in place in some form or are continuing to be developed in Scotland. Some respondents - organisations or individuals with a professional link to the health service in particular - recognised this in their comments, but in some cases called for such initiatives to be further developed. Such respondents often also highlighted the importance of a 'package' of measures being introduced. There was, in particular, a frequently expressed view that a range of factors influenced donation rates and these have to be addressed in a coherent and integrated way in order to increase organ donations. Respondents often cited the 'Spanish Model' which was seen to offer a fully integrated and resourced approach to improving donation rates (albeit one that was combined with a form of opt out authorisation system).

4.4 Some respondents made suggestions while also stating a preference for an opt out system; others made it clear that they favoured retaining the current opt in system, albeit with changes to improve its effectiveness, or they thought that efforts should be made to maximise the effectiveness of the current system before an opt out system was considered.

4.5 Not all respondents who commented at Question 2, however, offered suggestions on how the current opt in system might be changed. Some expressed the view that no change was needed - these respondents, including some organisations and individuals who worked in the healthcare field - thought the current system worked well, and that recent and current initiatives (reference was made to the UK strategy 'Taking Organ Transplantation to 2020' and a 'Donation and Transplantation Plan for Scotland 2013-2020') were already having a positive impact on increasing the number of successful organ donations. Others thought that making changes to the current opt in system would not be effective in achieving an increase in the number of organs donated for transplant, and they argued for a move to an opt out system instead.