Organ and tissue donation: baseline report 2021

Baseline Findings

The baseline findings presented in this report are divided into the three informational strands. The data presented in the Public Attitudes and Workforce sections address the organ and tissue donation context in Scotland, particularly in regards to public and NHS staff views on the legislation and donation generally, and NHS staff training and infrastructure needs to support donation authorisation processes. The Monitoring strand section presents routine data collected by NHSBT and SNBST on quantifiable aspects of the donation process.

Strand

A. Public Attitudes

Refers to

Public views on, attitudes toward, and behaviours associated with donation

Outcomes

1-3, 6-9, 13-15

Strand

B. Workforce

Refers to

Views, confidence, and practice of NHS Scotland staff members involved in donation processes

Outcomes

4, 5, 10, 12, 13 -15

Strand

C. Monitoring Data

Refers to

Data currently collected by NHSBT and SNBST on referral, authorisation, donation and transplantation rates

Outcomes

11, 12, 14-16

Public Attitudes

Evaluation Questions:

1. What are the public's views on, understanding and awareness of the new opt-out system?
2. What are the public's views on the NHS organ and tissue donation system, and donation as part of end-of-life care?
3. Are members of the public willing to discuss donation decisions with family?

A public attitudes survey, academic research, and a series of marketing evaluation surveys have helped form our understanding of public attitudes toward donation in Scotland leading up to the implementation of the Act in March 2021. The public attitudes survey was conducted in the summer of 2019, and the series of marketing evaluation surveys cover periods between June 2019 and January 2021. It should be noted that the public attitudes survey and the series of marketing evaluation surveys are not directly comparable to one another. The public attitudes survey posed questions more closely related to the outcomes stipulated for the Act. The series of marketing evaluation surveys' primary aim was to assess levels of understanding of and support for the law change, as well as people's understanding of, attitudes towards, and behaviours related to the law change, donation, and advertising campaign.

Public Attitudes Survey

In order to assess public views on donation and the move to an 'opt-out' system, the Scottish Government commissioned questions in the Our Voice Citizen's Panel survey, run by Healthcare Improvement Scotland, in summer 2019. Questions on donation were included in the Citizen's Voice Survey, alongside questions on Nursing and Midwifery care, and the Scottish Ambulance Service. A total of 4 questions, with 8 sub questions, on donation were included in the survey.

The Citizens' Panel is a large, demographically representative group of citizens regularly used to assess public preferences and opinions. Members were randomly selected from the general population and invited to join the Panel. Some targeted recruitment also took place in order to ensure that a representative Panel was created. At the time of the survey (June – Aug 2019), the Panel had 1,168 members from across all 32 local authority areas.

A total of 636 responses (54% response rate) were received, either by post, email or by telephone. Citizen's Voice assures that this level of return provides data accurate to +/-3.9% at the overall Panel level. However, results were not broken down into sub-categories (for example, sex or age), so all findings represent the sample overall.

The Panel members were asked for their opinions on the 'opt-out' system that will be implemented in Scotland. The responses to the individual questions included in the surveys are described in Figures 11- 14, available in the Annex.

Key Findings:

• There were high levels of support for, and awareness of, the move to an 'opt-out system; over 8 out of 10 (86%) of Panel members were aware of the decision to move to an 'opt-out' system in Scotland, and a similar proportion supported the introduction of an 'opt-out' system for organ and tissue donation (83%).
• Levels of trust and understanding were also high. Nearly 9 out of 10 (88%) understood that under the proposed 'opt-out' system, they may be presumed to be willing to donate unless they have stated that they do not wish to do so.
• Over three-quarters (76%) agreed they held trust in the system, compared to 3% who disagreed. 14% responded that they neither agreed nor disagreed, and 7% responded 'I don't know.'
• However, fewer respondents had registered their decisions or discussed their views with a family member. Just under half of respondents had already registered their decision about organ and tissue donation after their death (46%) and just under half (49%) had not. Around two thirds of those respondents (66%) said they were either very or somewhat likely to do this, 17% said they were somewhat likely and a further 17% were unsure.
• 9 out of ten respondents (91.6%) felt able to have a conversation with a family member or loved one about their organ and tissue donation decision, and over six in ten (61%) have had this conversation with family or a loved one.

Marketing Survey Data

Marketing data presented herein comes from five omnibus surveys conducted by Progressive, a marketing analysis company, on behalf of the Scottish Government Marketing team to monitor public views on and attitudes towards the change to an opt-out authorisation system for donation, These surveys were completed using nationally representative samples of around 1,000 people in June 2019 (sample of 1,002 people), September 2019 (sample of 1,007 people), March 2020 (sample of 1,101 people), September 2020 (sample of 1,070 people), and January 2021 (sample of 1,056 people). The samples were recruited online, through panel companies. It is important to note that each survey gathered data from a distinct sample, meaning that views were not tracked across the same group. Therefore, these survey results offer a series of snapshots. Figures 15 – 19 in the Annex illustrate the key findings of the Progressive omnibus surveys.

Key Findings:

Awareness of the law change:

• As of January 2021, 76% of omnibus survey participants were spontaneously aware of the law change and a total of 79% were aware after prompting. These are increased levels of awareness from the June 2019 omnibus survey (Figure 15).

Understanding of the law change

• As of January 2021, 84% of omnibus survey participants recorded understanding that under the new system one will be assumed to be willing to donate unless registering otherwise; this was a slight increase from June 2019 (82%). (Figure 16)
• Results from the pre-campaign survey conducted in November 2020, show that the majority of respondents believe that their decision will be respected under the opt out system and know that they can change their decision. However, only 38% agree that they know what to do or who to contact to opt out or find out more^[5].

Support for the change to an opt-out system:

• At January 2021, 83% of omnibus survey respondents recorded support for donation, generally. This is consistent with levels in September 2020.
• At January 2021, 76% of omnibus survey respondents recorded support for the introduction of an opt-out system compared to 13% recording lack of support. These levels are largely consistent with omnibus surveys since June 2019 data.
• Results from the pre-campaign survey conducted in November 2020 survey, show that around a quarter of respondents agreed that the move to an opt out system has changed the way they feel about organ donation, with 56% reporting that it has made them feel more positive, while 35% recorded that they feel less positive.

Willingness to donate or discuss donation decision with family and friends:

• The proportion of omnibus survey participants willing to donate has remained relatively stable at around three quarters from June 2019 to January 2021. (See Figure 18 in Annex)
• At the January 2021 omnibus survey, 52% participants reported having spoken about their wishes to family/partner/friends; this is consistent with the previous 2 surveys (Sept and March 2020) but a drop since Sep 19 (60%). (See Figure 19 in Annex)
• At the January 2021 omnibus survey, 52% of respondents reported they know the wishes of all or at least some of their family, compared to 60% in September 2019.
• At the November 2020 pre-campaign survey, 77% reported agreement with the need to discuss wishes with family and friends

Summary of Academic and Public Sector Research

This section summarises key findings across a range of academic and public sector research which has examined views on donation, the move to an opt-out authorisation system, and the impact of different kinds of public messaging on donation-related views, attitudes, and behaviours, prior to the implementation of the Act. To keep this section focussed and as applicable to Scotland as possible, sources will be kept to research based in UK contexts and examining deceased donation only. This section also draws from, and builds on, information presented in the 2018 Scottish Government Opt out organ donation: a rapid evidence review, which was used to inform the potential move to a soft opt out system in Scotland.

Research Limitations

It is important to note that while academic and public sector research indicate useful findings which may be applicable to the Scottish context, there are a few key aspects of these studies which limit generalisability.

• Firstly, the research included in this section, by majority, draws on samples from across the UK or from England, although the samples in two studies (Miller et al., 2019a; Miller et al., 2019b) primarily resided in Scotland. Clear differentiations between UK contexts are not made in any of the studies referenced in these section. For example, most studies favour terms from the English opt-out system such as 'consent' compared to the term 'authorisation'^[6] used in the Scottish system. It should also be noted that the majority of this research does not specifically include mention of tissue donation alongside mention of organ donation.

• Secondly, the opt-out system described in the research herein is often not indicative of the 'soft' opt-out system in Scotland. For example, in a 2021 study, opt-out was described with the excerpt: "they [potential donors] will be treated as having no objection to being an organ donor" (2021 Miller et al.: 5). The language used in this research is not consistent with Scottish opt-out procedures which includes a 'duty to inquire'^[7] core principle of the Human Tissue (Scotland) Act 2006. This principle requires that health workers should make every effort to establish the decision or views of the potential donor, and then to support their decision being fulfilled. Any suggestion that the decision was not validly made should prompt further discussion and investigation, such as a conversation with the potential donor's nearest relative. Therefore, it should be noted that study participants' responses were measured while reacting to descriptions of a system that is not consistent to that which is in place in Scotland.

• Further, samples in a number of the studies cited were self-selecting and not representative of the UK or Scottish publics (Miller et al. 2021; 2019a; 2019b), although some studies had a majority sample from those living in Scotland (Miller et al. 2019a; 2019b). This creates potential bias in the results as respondents who chose to participate in the study may have been individuals from a particular background, such as women (Miller et al. 2019b) or who were pre-disposed to be knowledgeable about, or interested in, organ donation prior to participating (Miller et al. 2019a).

• Lastly, sample language used in some studies to exemplify 'high-threat language' is, for example, informed by language used by the press, however is not reflective of, or appropriate for, public health campaigns (Miller et al. 2021), impacting its applicability to Scottish public messaging campaigns.

Key findings regarding views and attitudes:

• Negative attitudes have been identified as important barriers to organ donation (Morgan et al., 2008; O'Carroll et al 2011a, 2011b), which include: concerns that clinicians may not try as hard to save the potential donor; disgust at the thought of donation; that registering in some way hastens one's death; and discomfort at the thought of one's body being operated on for organ retrieval.

• Research on exploring the views of those who are unsure about becoming an organ donor (Miller et al 2019a, Miller et al 2019b) indicates that some felt: concerns about bodily integrity; uncertainty around the suitability of their organs for use in transplantation; that they lacked the appropriate information about organ donation and proposals for opt-out consent laws; and a desire to choose which of their organs would be donated.
• In the UK, minority ethnic groups tend to be less supportive of organ donation generally and have greater concerns about it (Morgan et al 2016). Key attitudinal barriers found were: uncertainties regarding religious permissibility; bodily integrity concerns; lack of trust in health professionals; little priority given to registration (Morgan et al 2016). Note that Significance of these factors varied by ethnicity/faith and age.

• Research exploring why people might plan to opt-in (Miller et al 2019b) indicates key factors influencing this decision: opting in ensures one's donor choice is explicitly clear and unequivocal to protect against family uncertainty and interference; desire to potentially save someone's life; personal experience of organ donation.

• This study (Miller et al 2019b) also explored the views of those that felt that a deemed consent system serves as the easiest way of indicating a donor choice. Findings suggest that these participants saw deemed consent as requiring no conscious effort or unwarranted paperwork to be completed, and that it protected ambivalent participants from making a challenging emotive choice about organ donation. A smaller proportion of this group felt unsure if their organs would be medically suitable and saw deemed consent as maintaining their positive stance while allowing medical professionals to assess the suitability of their organs.

• Research exploring potential barriers impacting why people might plan to opt-out of the new system in Scotland and England (Miller et al 2019b; 2020) suggests, in line with previous research, that important concerns are: medical mistrust, particularly in regards to using brainstem death criteria as criteria of death; and bodily integrity. Novel concerns suggested by one study (Miller et al 2020) are fears of unwarranted government control and a perceived threat to one's freedom of choice.

Key findings regarding impacts of public messaging:

• One study suggests that the application of language that induces a perception of threat to one's freedom of choice and which highlights the adverse consequences of not engaging in certain behaviours appears to significantly reduce study participants' organ donor intentions (Miller et al. 2021).

• Further findings from this study indicate that messages which induce a perception of a threat to one's freedom of choice were perceived to be significantly less credible than low-threat, autonomy supportive messages (Miller et al. 2021).

• This research also indicates that participants who plan to opt-out, and those who are unsure of their anticipated donor decision, may be at risk of experiencing a heightened response in which they may be driven to take action to safeguard or reinstate control over the notion they perceive as being under threat, in response to opt-out organ donation campaigns (Miller et al. 2021).

Overview of Marketing activity

The goals for marketing workstream centre on ensuring that a diverse range of media advertising (including TV, cinema, radio, print, social, search, outdoor, field and partnerships, a household mailing and website rebuild) successfully informed the public that the law around organ and tissue donation is changing. This workstream also sought to ensure that the language and delivery of public information about the law change was appropriate for members of the populations with special requirements and seldom-heard group, such as those with learning disabilities, from different faith groups, and from ethic minority communities, etc. There is currently no feedback or monitoring data for the activities described below; the purpose of this section is to catalogue activities conducted. This information will help provide contextual information to underpin understanding of the data collected on harder to reach groups in the 5 year period post implementation of the Act.

Marketing Activity Audience and Activities

Target Audience Group

General Scotland population

Implementation Activities

• Direct mailing to all households
• Redesign of the Organ Donation Scotland website
• News releases
• Main campaign, to include TV, radio, press, outdoor, digital, partnerships, and social media

Target Audience Group

Young persons approaching 16 years of age

Implementation Activities

• New landing page on Young Scot website mid Feb 21 and social media advertising on Young Scot channels

Target Audience Group

Scottish populations with special requirements and harder to reach groups, such as learning disabilities, faith groups, ethnic minority communities, etc

Implementation Activities

• Targeted media aimed at specific groups
• Stakeholder engagement, to identify best ways to reach their audiences and then providing appropriate tools and using their channels, etc
• Material for 23 multiple languages, BSL (British Sign Language) version, audio and Large Print format and Easy Read version
• Digital toolkit of assets for stakeholders

Overview of Stakeholder Engagement Activity

The goals for the partner and stakeholder engagement workstream centre on the inclusion of partner and stakeholder views into the implementation of the Act. In this section, an overview of activities of the Engagement workstream will be described, and more detailed information can be found in the Annex. There is currently no feedback or monitoring data for the activities described below; the purpose of this section is to catalogue partners and stakeholders worked with and activities conducted. This information will help provide contextual information to underpin understanding of the data collected on harder to reach groups in the 5 year period post implementation of the Act.

Work was undertaken by the policy implementation team to identify and approach organisations to explain the Act and agree ways that information could be provided to their member organisations or individuals. Thereafter the contacts were handed to SMARTS PR and since July 2019, this group has led stakeholder communication. This group has:

• Worked with 'invested partner' stakeholders, including:
  • Age Scotland,
  • British Heart Foundation,
  • Carers Trust Scotland,
  • Health & Social Care Alliance,
  • Muslim Council of Scotland,
  • Scottish Commission for Learning Disabilities,
  • Scottish Council of Jewish Communities,
  • Scottish Ahlul Bayt Society, and
  • Young Scot.
  • Sought partnership support from groups including:
  • BEMIS (Black and Ethnic Minority Infrastructure in Scotland),
  • Scottish Refugee Council,
  • MECOPP (Minority Ethnic Carers of Older People Project),
  • Scottish Public Health Network,
  • Cyrenians, and
  • Local Authority Communication Teams.
• Targeted 'invested partner' stakeholders to seek their support ahead of the main public information campaign being launched early 2021.
• Worked with partners/stakeholders to develop inclusive information to reach different audience groups e.g. age, understanding, ethnicity, faith and disability etc.
• Used channels most appropriate for the audience group using the trusted channels that stakeholders already have established.
• In addition, there was specific awareness raising of the law change with South Asian communities which was led by the Kidney Research UK, Peer Educator Co-ordinator for Scotland.