Public and media awareness and promotion of organ donation

DRAFT – NOT GOVERNMENT POLICY

Discussion Paper: Public and media awareness and promotion of organ donationContentsExecutive Summary...............................................................................................................................1

Purpose.................................................................................................................................................3

Introduction...........................................................................................................................................3

Search strategy......................................................................................................................................3

Thought process for organ donation.................................................................................................4

Drivers of attitudes, intent and action...................................................................................................4

Influencers of attitudes toward organ donation................................................................................4

Predictors of positive attitudes and intent........................................................................................5

Predictors of actual donation – family consent.................................................................................5

Sources of information and their impact...........................................................................................5

Effectiveness of specific initiatives........................................................................................................6

Mass media campaigns......................................................................................................................6

Community-based.............................................................................................................................8

National Campaigns using both mass media and community-based initiatives..............................12

Media portrayal...............................................................................................................................13

Discussion............................................................................................................................................15

Effectiveness....................................................................................................................................15

Successful and unsuccessful elements............................................................................................16

Confounding factors when measuring results.................................................................................17

Applicability of included studies to New Zealand............................................................................17

Conclusions and recommendations.....................................................................................................18

Design of future initiatives...............................................................................................................18

Prior to undertaking a campaign.....................................................................................................19

Discussion questions........................................................................................................................19

References...........................................................................................................................................20

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Executive SummaryResearch often finds that while the majority of people are in favour of organ donation, this does not always translate into actual donations. Public awareness campaigns are used to improve organ donation and transplantation knowledge, attitudes and intentions. International organ donation reform programmes often include a focus on improving public awareness.

Public awareness campaigns take various forms, for example, mass media, school-, work- or community-based, and interventions that combine several components. A systematic review and meta-analysis found that there is a five percent effect size for campaigns (Feeley and Moon, 2009). Combined initiatives (eg, mass media plus interpersonal components) appear to be most successful.

Awareness campaigns often coincide with either national reforms on organ donation involving multiple strategies, or other changes (eg, hospital process change or media coverage), rather than being individual interventions.

Media portrayal of organ donation is also important. The media is one of the public’s main sources of organ donation information. Negative portrayal of organ donation, whether in the press or in entertainment media, can affect transplant rates.

Almost all studies included in this discussion document were from overseas. New Zealand has a unique cultural environment, and what works in other countries may not work here. Caution should be used when interpreting the results of the included literature.

Before undertaking any campaign, an updated baseline of public attitudes towards organ donation is needed. A return on investment calculation should be performed and pilot studies should be used to test proposed messages. Robust evaluation processes to measure campaign success should be built into the campaign strategy.

This discussion document is one part of the whole-of-system review on organ donation, including a review on institutional arrangements. The findings from the institutional arrangements workstream will help determine whether a public awareness campaign is an appropriate part of the comprehensive package of initiatives recommended to the Minister at the conclusion of the review.

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Discussion questions

1. Does increased public awareness or a more informed public matter? How? Why? In what contexts?

2. Do you think the findings of overseas campaigns are transferrable to the New Zealand environment?


Purpose To support the development of a package of options for improving donation rates in New Zealand, this paper:

• summarises the available information and research on increasing public awareness and understanding of organ donation and transplantation through public campaigns and media

• identifies potential issues in the New Zealand context • puts forward questions for discussion.

The Ministry of Health commissioned an international literature review in 2007 (Maskill and Hodges, 2007) on the effectiveness of publicity, education and social marketing initiatives targeted to the public that aim to maximise organ and tissue donation from deceased donors. Where relevant, the finding of the earlier literature review are included in this document.

IntroductionResearch often finds that while the majority of people are in favour of organ donation, this does not always translate into actual donations. The factors that influence these decisions may be multifactorial and include knowledge, personal beliefs, external influences, emotional influences, and the prevailing institutional and policy context (Li et al, 2015).

In New Zealand, it appears that most people are in favour of organ donation (Phoenix Research 2007, Three30three 2012), however New Zealand still has a low donation rate (in 2013, 8.1 per million population compared with the highest rate - 35.1 per million population in Spain).

Individuals’ barriers to organ donation may include (Irving et al 2012, Maskill and Hodges 2007):

• lack of knowledge about organ donation and the process• belief in ‘myths’ (eg, black market, doctors will not work as hard to save a donor, unfair

allocation, people can recover from brain death)• lack of knowledge in how to go about becoming a donor (eg, signing a register, telling family

of their wishes (as family often have the final say))• a desire to keep body intact (religious or otherwise)• an idea that their organs are not suitable – for example, Downing and Jones (2008) surveyed

6230 adults in Ohio, US (including 2631 aged 50 years or over), and found that 29.5 percent of older adults were not willing to donate their organs, and of that subset, 48 percent of those did not want to donate as they thought their organs were not useful because of their age, overall health condition, or illness.

International organ donation reform programmes often include a focus on improving public awareness and understanding of organ donation and transplantation.

Search strategyA non-systematic search of both peer-reviewed and grey literature sources was performed in November 2015. The search focussed on papers published after 2007 to avoid duplication with the earlier literature review.

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The study design and risk of bias in individual papers was not assessed.

Papers focussing on living donation, clinical staff education and ethnic minorities were excluded as these are the focus of other discussion papers or workstreams.

Logic of increasing individual awareness

The decision to donate one’s organs is a multi-dimensional and complex process. People’s attitudes shape their intentions, and from those intentions come actions. The drivers behind each step of the decision pathway can change. For example, D’Alessandro et al 2012 found that perceptions of the benefits of organ donation and altruistic motives had the greatest impact on support (attitudes and intentions), while respondents’ knowledge on how to register was the most important on whether someone was actually registered (actions).

In order for individuals to move along the pathway, they may need multiple interventions that reinforce and build on each other over time (Deedat et al 2013). Where people have limited knowledge, campaigns might focus on changing attitudes through knowledge building and myth-busting. For people who have already made the decision to donate, campaigns might focus on changing that intention into action (eg, by encouraging family discussions to ensure an individual’s wishes are known).

A key step in this chain is family consent, given that it is families who ultimately decide whether organs will be donated or not. Awareness raising initiatives may therefore also be important for family decision-making.

Drivers of attitudes, intent and actionInfluencers of attitudes toward organ donationIrving et al (2012) conducted a systematic review of the qualitative literature to identify factors that influence the decision to be an organ donor (both living and deceased). Eighteen studies involving 1019 participants were included, thirteen of those studies were aimed at specific ethnic or cultural groups. The authors identified eight major themes regarding community attitudes towards organ donation:

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a. relational ties – relating to living donation b. religious beliefs c. cultural influencesd. family influencese. body integrityf. previous interactions with the health care system – medical mistrust, validity of brain death and

fear of early organ retrievalg. individual’s knowledge of the organ donation process h. major reservations about the organ donation process, even in those who support organ

donation.

Predictors of positive attitudes and intent Accurate factual knowledge and how informed a person feels have been positively associated with donation attitudes, willingness and donor status (Hyde and Chambers 2014, Yoo and Tian 2011, Holman 2013). Specific knowledge that may have an impact include the concept of brain death, the awareness of the need for organs and the number of people on waiting lists (Holman 2013).

Discussions with family or friends tend to be associated with knowledge and positive attitudes towards organ donation (Hyde and Chambers 2014, Febrero et al 2013) and willingness to donate (Murray et al 2013, Jeffres et al 2008).

Predictors of actual donation – family consentResearch shows that family consent to donation is a major rate limiting step. Knowing the potential donor’s wishes and the family’s own attitude towards donation will play a part in giving consent. Registers are one such way for people to make their intentions known, even if family consent is still required for the donation to take place. Being on a register indicates a person’s intent and families are therefore more likely to consent to donation (in countries that require family consent).

For example, Harrison et al (2008) stated that, where a potential donor’s family does not know of the person’s intention to donate in America, only 50 percent of families consent, compared with 90-95 percent for families of persons who have declared their intent to donate on a register. In Victoria, Australia, 93 percent of families consented to donation in 2010 if the donor was on the register, compared to 70 percent where the potential donor was not listed (Stephens et al, 2013).

Rodrigue et al 2009 found that next of kin were more likely to consent to donation when they had been exposed to more donation information in the months preceding a family member’s death. This finding highlights the potential importance of repeated exposure to organ donation information.

Sources of information and their impactRodrigue et al 2009 found that favourable attitudes and beliefs, being on a register and sharing donation intentions with others were all associated with more exposure to different types of information.

The most common source of organ donation information is media, for example, TV and newspapers (Febrero et al 2013, Rodrigue et al 2009, Jeffres et al 2008, Martínez-Alarcón et al 2013). Other sources include family and friends, health care professionals, personal experience, community events and the internet.

Research has found that the source of information with the most impact on people’s attitudes towards organ donation is likely discussions with family and friends (Febrero et al 2013, Jeffres et al 2008, Martínez-Alarcón et al 2013).

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Effectiveness of specific initiativesA 2009 editorial by Waterman and Rodrigue in the journal Progress in Transplantation identified five key themes of organ donation education:

1. early education through multiple channels – including media, internet, discussions with family

2. unbiased and accurate education3. tailored education – including by age, race, differing levels of health literacy4. using education approaches with proven success ie, do not reinvent the wheel 5. well-prepared educators – including driver licencing clerks and health professionals.

Feeley and Moon (2009) conducted a meta-analytic review of communication campaigns to promote organ donation. Findings across the included 23 campaigns indicate an overall 5 percent increase (r=0.05, p<0.01, 95% Confidence Interval (CI)=0.03 – 0.07) in study outcomes (eg, registrations) compared to control groups (n = 6,647,801).

The effect size for campaigns aiming to increase registry signings or increasing family discussions was 5 percent. The effect size for campaigns aimed at increasing positive attitudes (beliefs, willingness to donate) was not significantly greater than zero.

The study also looked at different methods of campaigns. The effects appeared to increase as the amount of involvement increased from media-only, to media plus interpersonal (ie, direct contact), and finally interpersonal-only). However, the 95 percent confidence intervals overlapped, so this finding was insignificant.

The review found it unclear what factors or campaign activities are more successful than others in promoting donation. The authors recommended that, prior to undertaking a media campaign, a baseline should be obtained. They also recommend that interpersonal methods be used during and after media campaigns. Media campaigns prime audiences to the messages they will encounter in the interpersonal component.

Deedat et al (2013) conducted a systematic review of 18 studies aimed at increasing donation rates (whether through registration, knowledge or intention) amongst ethnic minorities (mainly African Americans or Hispanics). Mass media-only interventions reported no significant changes in intention or willingness to register. Community-based interventions, either alone, or with mass media, were more effective in increasing registration rates. Important factors of successful campaigns included strong interpersonal components and immediate opportunities to register. There was some evidence that mass media-only campaigns addressed knowledge gaps and misconceptions (ie, the early stage of the decision process).

Mass media campaignsCoppen et al (2010) studied the effects of education campaigns in the Netherlands over 10 years (1998-2008). The campaign coincided with the introduction of the Organ Donation Act, an explicit consent opt-in register. The education campaign consisted of mailouts, TV, cinema and radio commericals, billboards, newspaper advertisements, brochures, leaflets, an internet site and national TV shows.

The study found a strong positive correlation between donor procurement rates and consent registration rates, suggesting that the register was successful in improving transplant rates. The

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authors also suggested that the cohesive, multi-channel approach was successful in increasing registrations. However, the authors noted that other policy measures, such as hospital processes and new legislation, occurred at the same time and it is difficult to separate the effects. They also found fluctuations in donor procurement rates which could not be explained by implementation of policy measures or other changes and suggest there are unknown mechanisms also affecting donor rates. They conclude that cohesive campaigns work, but the impact decreases over time.

Terbonssen et al (2015) studied the influence of information campaigns in Germany on specific knowledge and willingness to donate organs. Health insurance funds are required to inform their members about organ donation every two years. The information provided, in leaflet form, must include an organ donor card form. The authors found that the information campaigns were not associated with a relevant increase in specific knowledge, but were associated with an increased rate in donor card holders.

Krekula et al (2009) studied short and long-term mass media campaigns in Sweden. The campaigns were aimed at informing, educating, making people talk about donation and promoting donor cards and the register. The short-term campaign lasted for a month in 2001 and involved web information, news programmes on TV and radio, newspaper advertisements, articles and talk shows. The long-term campaign lasted for a year in 2004 and consisted of TV and radio trailers, newspaper advertisements, debate programmes and documentaries.

The short-term campaign produced no significant improvements. The long-term campaign increased the knowledge of the donor card from 24 to 35 percent and the registry from 19 to 40 percent (p<0.001 for both). There was an 11-14 percent increase in registrations (p=0.043). Neither campaign increased the number of people informing relatives of their decision at a statistically significant level. The campaign affected middle-aged women the most.

A Northern Ireland campaign ran from February to October 2014 and included TV/cinema, radio, digital and poster advertising. The main campaign objective was to raise awareness about organ donation and to encourage people to talk about their donation wishes with their family and close friends. The campaign used two concepts, one from the perspective of the donor family and the other showing the perspective of a recipient family.

A survey of 1050 Northern Ireland adults (16 years +) conducted between November and December 2014 found that 72 percent could recall at least one campaign element. Levels of recall for the various elements were: film adverts (61 percent); campaign posters (47 percent); radio adverts (22 percent); campaign website (16 percent); and digital adverts (7 percent). 33 percent of those exposed to the campaign said that the campaign had encouraged them to think about their donation wishes, 15 percent said the campaign had encouraged them to discuss their donation wishes with family and friends and 9 percent had tried to find out more about organ donation. Other outcomes included: 5 percent had asked a family member about their donation wishes; and, 4 percent said that the campaign had encouraged them to put their name on the Organ Donation Register.

The survey results were also compared to a 2013 baseline survey on peoples’ views on organ donation. Results showed a positive correlation between campaign exposure and positive attitudes towards organ donation. 40 percent of those not currently registered said they would be very likely or fairly likely to put their name on the register in the near future, compared with 38 percent in 2013). 43 percent were unsure, compared with 39 percent in 2013, and 18 percent were not very likely or definitely not likely to do so (23 percent in 2013). 41 percent had talked to family and friends about organ donation (38 percent in 2013).

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Quick et al (2012) evaluated the effectiveness of a direct-mail marketing campaign to increase donor registrations in 18 year olds residing in Illinois, US. 139,356 individuals received either a letter from the Secretary of State, a brochure from the Secretary of State, or both. A total of 6908 new registrations were received as a result. The letter only, and the letter plus brochure were more effective than the brochure only in generating registrations (p<0.001 for both comparisons), possibly due to the fact that the letter was personally addressed to the recipient, rather than a generic brochure. There was no significant difference between the letter only and the letter plus brochure in generating registrations. Costs per registration varied between USD$6.41 for the letter only, through to USD$13.19 for the brochure only.

Similar to the above study, Quick et al (2015) evaluated the effectiveness of a direct-mail marketing campaign to increase donor registrations in 18 year olds residing in Illinois, US. In order to identify the most effective framing device, four different brochures were distributed framed from the vantage point of: organ donors, organ recipients, individuals awaiting a transplant or a combination of all three vantage points. 60,000 mailouts were sent, resulting in 3583 new registrations. The authors found that individuals register at a statistically significant greater rate following exposure to the combination vantage point (7.73 percent registration rate, compared to the other frames, all of which were between 5.61 and 5.94 percent). The cost per registration was USD$5.85 for the combination frame (most effective brochure) taking into account production and distribution of the brochures.

Rodrigue et al (2014) assessed the impact of different one-minute donation videos on American adults. The video featuring a paediatric transplant recipient had the most favourable impact on organ donor willingness. Other videos featured a patient waiting for a transplant, a patient who dies while on the waiting list, the family of an organ donor and a national video on donation.

LaVail et al (2010) analysed audiovisual Public Service Announcements and suggested that appeals to promote organ donation should be implicit, maintaining the individual’s freedom of choice. Being explicit removes this ‘choice’ and may be less effective.

Studies included in the 2007 Ministry of Health literature review also reported mixed results with mass-media campaigns.

Community-based Community-based campaigns are conducted in community settings, for example, workplaces, schools, driver licencing offices and social media.

Li et al (2015) conducted a systematic review on community-based interventions and willingness to be a donor, and included 63 studies. The types of interventions included were advertising, active learning, community partnerships, driver licencing office interventions, education at schools and workplace. Overall, the authors found the quality of evidence was low and risk of bias was high. The authors found that participants were more likely to commit as donors (relative risk 1.70, p=0.002, 95% CI=1.22 - 2.36) and had higher levels of willingness to donate (standardized mean difference 0.29; p=0.04, 95% CI=0.01 - 0.56). There was no significant effect on the intention to donate (relative risk 1.19, p=0.14, 95% CI=0.94 - 1.51).

Salim et al (2010) studied the effects of a combined mass media and community-based interpersonal campaign on donor rates in California, US. The initiative consisted of making the organ donation registry signup available online, media advocacy (public services announcements, news conferences, newspaper opinion-editorial pages), community outreach in federal buildings, universities, companies and public libraries. The campaign promoted family discussion.

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Two years before the campaign, and two years after the campaign were studied for comparison. Consent for donation increased from 47.5 percent to 51.0 percent (p=0.064) and family declines decreased from 44.1 percent to 32.6 percent (p<0.0001). The authors warn that there is no way to directly attribute the results to the campaign.

Feeley and Kruegler et al (2015) studied the effects of four ‘challenge’ campaigns in 2012 and 2013. Each campaign was one month long and teams (ranging from 1-20 people, with a median of seven members) completed for monetary rewards and public recognition. Outreach efforts included use of information tables, social media and direct approaches.

Across the four campaigns, 107 teams were formed that saw 2286 new registrations, an average of 21 new registrations per team (although 40 percent of teams achieved no new registrations). Teams that received higher numbers of registrations relied, almost exclusively, on face-to-face communication and carried physical enrolment cards with them during the campaign. The findings indicate that interpersonal communication was more effective than relying on social media, and having enrolment cards on hand are more effective (as cards are available immediately, rather than relying on people to act at a later point).

Morgan et al (2011) analysed the impact of two different campaign strategies at US universities: a media-only campaign and a media plus interpersonal outreach campaign. The media component consisted of newspaper and radio advertisements, billboards and postcards within the university. The interpersonal outreach components consisted of staffed tables at student unions, faculty clubs and other central sites. The staff handed out free merchandise and brochures using this as an opportunity to ask passers-by about organ donation. The study utilised a pre-test/post-test design, and a total of 1131 individuals responded (51 percent students, 35 percent staff, 11 percent faculty and 3 percent administrators).

The percentage of individuals who had signed a donor card increased 12 percent from pre-test to post-test in the media plus outreach campaign, 6 percent in the mass media only, and 5 percent in the control. Similarly, the percentage of individuals who discussed organ donation with family members increased 18 percent from pre-test to post-test in the media plus outreach campaign, compared with 9 percent in the media only and 12 percent in the control (this result was not statistically significant). The authors found that the mass media only campaign was not any better than the control.

In New Zealand, a group of students, as part of a public relations paper at the University of Waikato, ran a campaign aimed at encouraging people to talk to their family about organ donation (three30three, 2012). In “Spill the Beans”, the three-day campaign included videos on YouTube, Facebook pages, ‘freeze-mobs’, ambassadors and wallet cards. In a survey following the campaign, they found that 93 percent of people had told their parents of their wishes (compared to 67 percent at the baseline) and 89 percent knew their parents were responsible for the decision (compared to 68 percent at the baseline).

WorkplaceMorgan et al (2010) studied the effects of low and high intensity campaigns in workplaces. Low-intensity campaigns consisted of media-only interventions (brochures with a register sign-up card and myth-buster material distributed via paychecks, email, intraoffice mail and cafeteria tables, plus newsletters). High-intensity campaigns consisted of the above and staffed tables in central locations such as the cafeteria. The staff distributed free merchandise and offered to be witnesses for signing donor cards. The staff also distributed brochures on how to talk to family members. Campaigns

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lasted 10 weeks, with 15 companies each in low-intensity, high-intensity and control groups. High-intensity workplaces had a 6 percent increase in registrations and low-intensity campaigns resulted in a 3 percent increase, compared with control sites (p<0.001). Both forms of campaigns led to increases in attitudes and knowledge.

School-based campaignsA systematic review of classroom education identified 15 studies from nine countries (Li et al 2013), where most programmes consisted of one or two classroom sessions. All studies included found a positive effect on the outcome they were measuring (increased knowledge, attitudes towards organ donation, or increased family discussions). However, there was variable and inconsistent effects on intent to donate or register. No studies measured any change in registrations or actual donations. The authors were unable to identify what specific elements of the programmes were associated with effectiveness as there was insufficient information.

Rios et al (2011) surveyed 283 secondary school teachers in Spain to determine acceptance of an educational programme on organ donation. 54 percent of the respondents believed that it would be appropriate to introduce an education programme in secondary schools. The majority (71 percent) believed that a collaborator from the Regional Transplant Team would be the best person to carry out the programme, with only 11 percent saying a teacher would be the most appropriate.

Studies included in the 2007 Ministry of Health literature review also found positive outcomes with school-based campaigns.

Driver licencing officesHarrison et al (2008) studied the effects of a 1-hour training intervention for 76 driver licencing clerks in the US, focussed on the new registry, information about organ donation and communication strategies for dealing with the public. Registration rates were 14 percent higher in counties with trained clerks compared with controls, and were 9 percent higher than statewide rates. Training significantly increased clerks’ knowledge, beliefs, behaviours and intentions towards donation.

King et al (2012) analysed an initiative consisting of point-of-decision materials (including posters and cards) at certain driver licencing offices in Michigan, US. Registration rates for three to six months after implementation of the campaign doubled. Authors found that the cost per registration was USD$1.34.

Harrison et al (2010) studied the effects of a combined mass media, community-based interpersonal campaign on donor rates in Michigan, US. The initiative consisted of mass media (billboards and radio), point-of-decision materials at driver licencing offices (posters, cards), and volunteer-staffed on-site events the driver licencing offices. These components were in waves – mass media and materials the first two months, materials and on-site events in months three and four, and finally, materials only for the following months. Compared to baseline data, registrations increased 200 to 300 percent in intervention areas. The addition of the interpersonal on-site component greatly increased the rates. Costs per registration ranged from USD$14.98 to USD$34.74 (King et al, 2012).

Quick et al (2013) looked at an American campaign focussed on driver licencing offices (20 intervention sites and 20 control sites), consisting of mass media (radio and outdoor advertising), interpersonal component (volunteers and driver licencing clerks), and point of decision materials (brochures, posters) – introduced in phases. The authors found that the campaign mitigated decreasing registration rates in facilities with both low and high historic registration rates. The results partially supported combining various message strategies (ie, media, interpersonal and

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materials). However, the results suggested that the mass media and point of decision materials taken separately did not significantly reduce the decreasing registration rates – the authors caution that the return on investment may not be sufficient.

Social mediaSocial media (eg, Facebook, YouTube) is often used to enhance mass media and community campaigns. Studies included in this section have a main focus on social media, however may involve other components (eg, interpersonal).

Cameron et al (2013) studied the effects of Facebook’s new option to specify organ donor as part of a user’s profile in the US. This option was initially offered to 30 percent of US users. Educational links were offered to those considering the status and if a user specified ‘yes’, they were offered a link to their state registry. User’s ‘friends’ were also notified of their new organ donor status. On the first day of the new option, registration rose 21-fold. The study looked at the 13-day period from when the option was rolled out. The increase in registrations declined over the 13-day period, and by the last day were only 1.1 times the baseline. There was a net 6-fold increase in registrations over the 13-day period.

In a follow-up paper, Cameron (2015) suggests that the initiative was so successful as it moved the discussion from the motor vehicle licencing environment (where most registrations occur) to a more ‘comfortable’ place among friends. The author suggests that Facebook appeals to social norms among groups who likely have similar behaviours, therefore it gives an emotional nudge to encourage friends to imitate observed behaviour that they were inclined to pursue anyway.

Brzezinski and Klikowicz (2015) studied the effects of a five year Facebook campaign in Poland. Poland has an ‘opt-out’ register, so numbers of registrations were not an appropriate measure to analyse. The Facebook activities are part of a campaign ‘club’ aimed at raising awareness and education of organ donation – whose main outlet in the internet (ie, Facebook, Twitter, Instagram, YouTube). The Facebook page had 137,000 ‘fans’, and at the time of writing the paper (May 2014), was the number one organ donation promotion page in the world. 27.3 percent of the club’s members found out about the campaign through Facebook. The authors suggest that two way relations, spread over time, are required for social media to effectively engage and exert influence on the public. The authors were unable to assess how the campaign affected the actual numbers of transplantations.

This Facebook option is available in New Zealand, and the link takes viewers to the New Zealand Transport Authority’s information page on organ donation and how to declare your intentions on your driver licence.

In a letter to the editor, Kalra (2012) cautioned that people may register to be organ donors due to peer pressure from their social network.

Stefanone et al (2012) looked at three different online media campaigns - traditional online adverts on Facebook and Google; student-seeded campaigns on social networking sites; and challenge campaigns on social networking sites where teams competed for monetary prizes related to numbers of new registrations.

Over three years, the campaigns combined resulted in 35,715 unique visits to the project’s website, but only 196 new registrants. Use of student seeders and challenge campaigns resulted in greater attention to the website, donor card requests and subsequent returns. These results suggest that campaigns with an interpersonal message produce a larger effect on donation actions than

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traditional mass-media messages. Authors suggest that traditional online advertising could be used to increase awareness, while advocates (eg, student seeders and challenge campaigns) could be used to facilitate conversations and move individuals to action.

D’Alessandro et al (2012) analysed an 18-month social media and interpersonal campaign aimed at college student members of a student organisation in the US. The campaign was intended as a viral communication process designed to spread the word, motivate others to participate in the social spreading of information, and to get people to register. The campaign had 20,421 website visitors, 4473 Facebook members, 1189 YouTube video submissions with 164,000 views, 19,623 visits to a state’s organ donor registration page and 9,000 actual donor registrations. Within the student organisation, donor registrations increased 28 percent.

Hitt et al (2014) analysed the effects of adding a social networking component to an existing University challenge campaign. The original campaign ran for 6 weeks every year and challenged two rival universities to get the most donor registrations. The campaign used radio announcements, flyers, posters, information tables and blood drives to help spread the word. Social media advertising supplemented the campaign after the first year, adding Facebook advertisements the second year and in the third year, also adding Facebook fan pages and widgets that people could post to Facebook, twitter, blogs etc.

The authors found no significant difference between direct and social network routes for visits to the organ donation registration page. However, as the numbers of registrations increased 101 percent in the second year (from 224 sign-ups to 451 sign-ups) and 289 percent in the third year (to 1756 sign-ups), this indicates that social media was effective in enhancing the campaign.

National Campaigns using both mass media and community-based initiativesAn Australian campaign “To Donate Life, Discuss It Today – OK” conducted in 2010-2012 consisted of television, print and outdoor advertising; online communications (including a campaign website, Facebook, YouTube and Twitter); media publicity (including radio and editorials); and community outreach (including information stands, events and speaking engagements). The campaign was aimed at increasing knowledge, promoting family and community discussion, and myth busting.

Evaluation of the campaign showed there was a 74 percent increase in registrations compared to the corresponding period in 2009, and the positive trend continued months after the campaign ended. Levels of family discussion increased by 10 percent (to 58 percent), knowledge of family wishes increased by five percent (to 56 percent), and awareness that family consent is requested prior to donation increased by six percent (to 70 percent) (Australian National Audit Office, 2015). There was a high level of media coverage of the campaign and the project website received 103,414 visits. Facebook fan numbers increased from 898 prior to the campaign to 17,700 (McCoy, 2011).

A campaign in Scotland “A wee chat about organ donation” conducted between 2012 and 2013 consisted of television, print and outdoor advertisements; community outreach (including information stands and events using real-life stories); direct mail; and a project website that allowed people to publicly celebrate their support. The campaign was aimed at getting people to talk about organ donation and focussed less on death and more on life.

The project estimated that an additional 621,740 people may have talked about organ donation (out of an adult population of 4,441,000). At one point, the percentage of people who said they had talked to friends or family about organ donation increased from 40 percent to 54 percent. There was a 57 percent increase in text-to-register responses, compared to a previous campaign held in

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2011/12. Web registrations increased by 26 percent during the campaign’s run, compared to the same period in 2011/12. 54 percent of new visitors to the website went on to join the register.

Media portrayalAs the media is one of the general public’s main sources of organ donation information (Morgan et al, 2007), how organ donation is portrayed in the media is very important.

News media portrayal of organ donationQuick et al (2009) analysed news coverage on ABC, CBS and NBC networks between 1990 and 2005. The authors found that approximately two to four broadcasts surfaced per month. The majority of stories were positive. However, less than 10 percent of the broadcasts indicated how to become a potential organ donor.

Reporting of negative organ donation news stories in the media is linked to drops in transplantation rates. Negative stories, such as manipulation of the system and ‘harvesting’ of organs, reinforce the public’s negative beliefs in organ donation. If a person was hesitant to become an organ donor as they thought their organs might be harvested, reporting of stories in the media, which has widespread reach, would reinforce the person’s fears.

In 1980, a UK primetime current affairs show “Panorama” aired on BBC and claimed that two in every 100 people in Britain are being labelled dead when they could make a full recovery. It took 15 months for donor referral rates to recover (Misterka et al, 2010).

Misterka et al (2010) examined the effects of the national media in Poland on transplantation rates. In 2007, there was a series of negative events reported connected with transplantation. The events included a transplant surgeon being accused of murder and misconduct in transplant operations. The reports were highly emotive and used terms such as “Doctor Death” and “organ trafficking”.

As a result, 2.5 months after the reports, the number of transplantation fell by 56 percent. A survey found that over 10 percent of Poles changes their opinion of organ donation from positive to negative as a result of the media report.

In Germany, doctors at multiple transplant centres allegedly manipulated the organ transplant allocation system in order to help their patients get donor livers more quickly. The issue gained widespread media coverage across the EU. Donation rates decreased by 20-40 percent in Germany since the first case came to light in 2012 (Shaw et al, 2013).

Media advocacyIn Venezuela, the national transplant organisation implemented a strategy for working with the media, including a media hotline that promptly responds to request for information, training programmes, relationship building, and materials. Pacheco et al (2009) analysed the media coverage of transplantation from 2005 to 2007. Over 80 percent of stories were of a positive nature. They found that media presence increased by 200 percent in 2007. They found a positive correlation between the number of stories in the media and the numbers of registrations (R2 = 0.9713), and the number of deceased donor transplants (R2 = 0.8904). Deceased donor transplants rose from 3.4 per million in 2005 to 6.8 per million in 2007. The number of family refusals fell from 41 percent in 2005 to 31 percent in 2007.

In 2005, a campaign was launched by “Donate Life California” to coincide with the first online organ donor registry in California. Media advocacy was identified as an important part of the campaign. A media kit was created to assist reporters, which included key messages about the campaign, fact sheets, statistics and story ideas. The campaign also held simultaneous news conferences and

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offered in-person briefings with major newspapers. They found that the media advocacy efforts also allowed the team to identify and build relationships with influential reporters.

The Spanish National Transplant Organisation has a communication policy for the media based on four principles aimed at assisting the media to handle information about donation and transplantation appropriately:

i. A 24-hour telephone line available for consultation;ii. Easy and permanent access to the media;

iii. Connection with journalists built through dedicated meetings aimed at learning about mutual needs; and

iv. Delivery of messages with no intermediaries.

Spain utilises the media to promote organ donation through the dissemination of positive news. Each year Spain conducts a training seminar in organ donation which is aimed at journalists to provide first-hand information about organ donation and transplantation processes (DonateLife Network, 2013).

Entertainment media portrayal of organ donationAs entertainment media presents fictionalised narrative accounts, these are cognitively processed differently than factual information. There is evidence that viewers suspend counterargument and become fully absorbed in the storytelling (Morgan et al 2007).

Harbaugh et al (2011) analysed all US primetime medical dramas with transplant themes between 2008 and 2010. Episodes containing any negative message and any positive message were viewed by similar numbers of households (155 million and 145 million respectively). However, episodes containing only negative messages had over twice the household views compared to episodes containing only positive messages (8.4 million vs 4.1 million, p = 0.01).

The most common misrepresentations of transplantation were doctors gaming the system and doctors portrayed as ‘vultures’ who are eager for patients to die to procure their organs. Declarations of premature death, donor bodies being treated with dispassion and black markets were also portrayed.

Morgan et al (2009) surveyed viewers of four US television dramas depicting organ donation storylines. The authors found that viewers who were not organ donors prior to watching the programmes were more likely to decide to donate organs if the programme explicitly encourage donation, portrayed characters revealing how they had become donors, and discussed the merits of donating. Viewers were more likely to become an organ donor if they were emotionally involved in the narrative. The authors found that, when an episode focusses on an organ donation myth, viewers were the most likely to report accepting the myth as accurate.

Khalil and Rintamaki (2014) surveyed viewers of a US drama episode focussed solely on organ donation, presented in an accurate way. They found the more entertaining a viewer found the programme to be, the more likely viewers were to positively discuss organ donation with others (p < 0.001). This is a similar finding to Morgan et al (2009) above. Viewers with high recall of the storyline were more likely to reject myths about organ donation and to positively discuss organ donation with others.

Morgan et al (2007) identified all entertainment television shows on major network shows from 2004-2005. They found that the majority of shows portrayed myths of organ donation (eg,

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corruption in the medical and organ allocation systems). Rarely was organ donation portrayed in a positive way.

Yoo and Tian (2011) studied the effects on exposure to entertainment TV programmes (showing mainly negative portrayals of organ donation) and organ donation intentions in 429 American college students. They found that recall of TV programmes significantly predicts people’s perception of medical mistrust, which in turn, negatively predicts attitudes towards organ donation.

Journalist knowledge and attitudesAs media is one of the main source of organ donation information for the general public, it is useful to investigate the knowledge and attitudes of journalists, as they will be the people reporting the stories. Journalists need to have accurate knowledge regarding organ donation, and report it in a clear way to prevent the spread of misinformation.

Martínez-Alarcón et al (2010 and 2011) surveyed 126 Spanish journalism students on their attitudes and knowledge towards organ donation. The authors found that 78 percent of students would be willing to donate their organs. However, the authors also found that only 43 percent of students understood the concept of brain death and 13 percent believed that a person with brain death can recover and lead a normal life.

These findings indicate that journalists may not always possess the knowledge required to report an organ donation story accurately.

Discussion Due to the nature of the interventions studied, the majority of papers included are before-after studies, which are considered less reliable and more at risk of bias than stronger designs (eg, randomised controlled trials).

Effectiveness Mass mediaEvidence on the effectiveness of media-based campaigns in increasing knowledge, family discussions or registrations is mixed. Media campaigns may increase knowledge or registrations (eg, Coppen et al 2010, Public Health Agency 2015, Krekula et al 2009), however Coppen et al (2010) noted that it was difficult to separate the effects of the media campaign with other policy measures occurring at the same time, such as hospital processes. Direct mail-outs to teenagers appear to increase registrations (Quick et al, 2012 and 2015).

Community-basedLi et al 2015 found that community-based interventions may be effective in increasing the commitment, but not intentions to donate. However, the overall risk of bias was high, and this may have led to overestimation of the relative treatment effects of these interventions.

Workplace interventions appear to be have some positive effect. Campaigns with an interpersonal components were more successful than a passive, media-based approach (Morgan et al 2010 and 2011).

School-based campaigns are effective at increasing knowledge and family discussions, however the effects on intent to donate or register are inconsistent (Li et al 2013). The interpersonal component is likely one of the reasons these campaigns are often successful. Students are actively involved in the learning and have the opportunity to ask questions.

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Interventions at driver licencing offices also appear to have a positive effect on increasing registrations.

Included studies suggest that social media is effective in reaching large populations and increasing registrations (Cameron et al 2013 and D’Alessandro et al). It is likely that social media would be an effective way of spreading the word of campaigns.

Combined interventions (generally mass media and community-based interpersonal campaigns) are effective in increasing registrations, discussions with family and knowledge (Salim et al 2010, Harrison et al 2010, Quick et al 2013, McCoy 2011, Scottish Government 2013). The interpersonal component may enhance the media component (Feeley and Moon 2009, Harrison et al 2010, Quick et al 2013, Deedat et al 2013). It is likely that the media component ‘primes’ the audience, and the interpersonal component reinforces the message and drives people to action (Feeley and Moon 2009).

Media portrayal and guidelinesThe way organ donation is portrayed on news media may affect transplantation rates. Negative portrayals, such as those detailed in Misterka et al 2010, directly affected rates. Strategies aimed at improving the way transplant organisations work with the media appear to be effective.

Entertainment media also affects viewers’ attitudes towards organ donation. The more emotionally involved a viewer, the more the story has an effect on the viewer. However, organ donation is often portrayed negatively in entertainment media (Morgan et al 2007) and can be a source of, or reinforce peoples belief in, myths (such as a ‘black market’ for organs).

Successful and unsuccessful elementsCommunity-based interventions with an interpersonal component, either alone, or with mass media, may be more effective in increasing registration rates than media-only campaigns.

MessagingPrior to the successful “Wee Chat” campaign in Scotland, campaigns were focussed on death and emotional pain. For example, one campaign featured the face of a young girl and asked viewers whether they wanted to “Kill Jill”, and gave two options of “yes” or “no” (indicating that if you picked “no”, you would donate your organs to save her). However, research showed that people were becoming desensitised, and also people found that loading messages with heavy emotions made it harder for them to discuss organ donation. Therefore the “Wee Chat” campaign was focussed on positivity and life with gentle support, rather than death, guilt and ultimatums.

The UK Behavioural Insights Team (the “Nudge Unit”) conducted a randomised controlled trial in the UK (Harper et al, 2013) analysed the effects of different types of messages on whether people signed up to the national register. The trial ran for five weeks, during which time over one million people saw one of the eight messages. Some of the variations (eg, adding a picture to an otherwise identical message) represented relatively small changes.

The best-performing message drew on ideas of reciprocity and fairness by asking people “If you needed an organ transplant, would you have one? If so please help others.” If this message were to be used over the whole year, it would lead to approximately 96,000 extra registrations completed, compared with the control condition. One message actually resulted in a decrease in sign-up rates compared to the control (a message stating the social norm combined with a picture of a group of people – however, the same message combined with a different picture produced results greater

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than the control). The study emphasised the importance of testing and trialling interventions to determine which intervention is going to have the biggest impact.

Population considerationsThe success of different types of interventions will vary according to the population. Social media will be more popular with younger generations, as they are more likely to use such sites.

Downing and Jones (2008) held two focus groups of adults aged 50 to 70 years in Ohio, US. Older adults indicated that brochures were the best way to educate their group, as brochures provided more information than mass media messages (eg, TV or radio).

Gender may also affect how well messages are received. Females are more inclined to talk about emotional issues, such as organ donation, and are more likely to seek health information (Krekula et al, 2009). Krekula et al 2009 suggests that reaching the male population may require a different strategy, possibly presenting information in a more factual and less emotional way.

Confounding factors when measuring resultsCampaigns are sometimes part of a wider national reform on organ donation. For example, the Australian National Reform Programme had nine measures, of which community awareness was only one (Australian National Audit Office, 2015). Therefore, there are often other changes occurring at the same time as campaigns (eg, policy changes, hospital process changes). It is hard to separate out the effects of the campaigns alone. It is possible that the effect sizes reported in some studies may be somewhat attributable to changes outside the campaign.

Most evaluations of campaigns were conducted soon after the campaign had ended (eg, within a year). Therefore the sustained effects of campaigns is generally unknown. Most studies measured increases in registrations, which has a definite end-point (people are unlikely to unregister), so the authors did not need to measure the effects years after the campaigns had ended.

Applicability of included studies to New ZealandIn this literature review, only one (non-peer reviewed) study in New Zealand was identified (three30three, 2012). New Zealand has a unique cultural environment, and what works in other countries may not work here. Baseline views and pilot studies to test any campaign messages will be important.

Many studies included in this paper used registrations as a measure of effectiveness. New Zealand does not have an official register, so the applicability of those studies to New Zealand is uncertain. While some studies may demonstrate positive increases in registrations, the studies do not tend to measure actual donation rates. However, being on a register indicates a person’s intent and families are therefore more likely to consent to donation.

Conclusions and recommendationsWhile there seem to be positive effects from campaigns, effects tend to be small. The meta-analysis conducted by Feeley and Moon (2009) found that while campaigns aimed at increasing registrations or family discussions were successful at a statistically significant level of five percent, campaigns aimed at increasing positive attitudes (beliefs, willingness to donate) were not significantly greater than zero. The sustained effects of campaigns is generally unknown.

Campaigns that involve multiple components (both mass media and interpersonal) appear to be more effective. Mass media components may be useful in increasing knowledge and debunking myths, in other words, influencing an individual’s attitude to organ donation, there is little evidence

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on whether they change an individual’s intention to donate (Deedat et al, 2013). Interpersonal components are often successful in translating a person’s intentions into action (Li et al, 2015). Media campaigns can help ‘prime’ the audience for the interpersonal component. . Interpersonal methods reassure individuals’ decision to donate, provide the means to pledge one’s donation wishes and communicate to individuals the ideal standard of altruism (Feeley and Moon, 2009).

While public awareness campaigns increase registration rates and attitudes, it should be kept in mind that Spain, often considered as a ‘world leader’ in organ donation, increased their donation rates by almost 250 percent between 1989 and 2013 without significant advertising campaigns. The Spanish model focuses mainly on hospital processes, however does pay close attention to the media (including a communications policy) and uses the media to disseminate positive news stories (DonateLife Network, 2013).

This discussion document is one part of the whole-of-system review on organ donation, including a review on institutional arrangements. The findings from the institutional arrangements workstream will help determine whether a public awareness campaign is an appropriate part of the comprehensive package of initiatives recommended to the Minister at the conclusion of the review.

Design of future initiativesAs evidence shows that initiatives with multiple components (ie, mass media and interpersonal) are more effective, future initiatives should involve more than one component. Social media should be employed alongside more traditional methods to ensure a wider reach.

Sustained messaging, over a number of years, may be required. As New Zealand does not have a register, there is no ‘end-point’ officially stating a person’s intentions which will indicate that a campaign has been successful and can end (compared to other countries where signing a register could be seen as an end-point). Additionally, as found in Rodrigue et al 2009, next of kin were more likely to consent to donation when they had been exposed to more donation information in the months preceding a family member’s death, highlighting the importance of repeated exposure to organ donation information.

Due to New Zealand’s individualistic society, awareness-raising campaigns may be more effective than actively promoting organ donation.

One of the main barriers to donation is family either being unaware of a potential donor’s wishes or overriding those wishes, therefore campaigns often focus on encouraging family discussions. New Zealand campaigns undertaken by Organ Donation New Zealand have also focussed on this message. This should continue to be a focus, unless baseline results indicate a more common barrier that should be addressed first.

Prior to undertaking a campaignIn order to design an effective campaign, the following should occur:

- Identify a current baseline of New Zealand public views to determine current attitudes to organ donation and to determine what barriers exist. This baseline can be used to pinpoint what to focus any campaigns on (eg, if people are unaware that family have veto rights on whether their organs are donated, then discussions with family will be an important focus). The baseline would determine where in the intervention logic a campaign should focus on (eg, improving attitudes or solidifying intentions).

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- Use focus groups or pilot studies to identify the best approaches and to test messages of any campaigns before launching nationwide.

- Determine the likely return on investment of any campaign using projected donation rate increases upon current baselines and medical cost savings resulting from transplants.

- Ensure there is a robust evaluation process in place that will measure a campaign’s success, using metrics such as public opinion surveys.

Discussion questions1. Does increased public awareness or a more informed public matter? How? Why? In what

contexts?2. Do you think the findings of overseas campaigns are transferrable to the New Zealand

environment? 3. What type(s) of approaches do you think would work in New Zealand?4. Campaign techniques can range from passive awareness-raising to active promotion of organ

donation. What do you think of the strategies behind awareness vs promotion? Is one more suitable for the New Zealand environment?

5. Do you think the New Zealand media is reporting organ donation in a positive light? Is there potential to work with them more closely? What is the media’s role?

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Documents

Public and media awareness and promotion of organ donation