The challenge

1. A strategy to create a revolution in Public Behaviour in Organ DonationTSS Forum – 30th July 2014Ceri Rose – Assistant Director – Marketing and Digital

2. The challenge • 2020 strategy Outcome 1 • increase consent/authorisation rates to over 80% • Little improvement since 2008

3. The approach • Research • Understanding current attitudes and behaviours

4. Organ donation not a topic which many have been exposed to Perception that it is the exception rather than the norm Organ donation is not discussed Few have first hand experience • Only 50% have ever spoken to anyone about organ donation • 1/3 say its never come up in conversation • Many are uncomfortable confronting upsetting emotions around their own mortality • Death is considered too personal and too sensitive in conversations • Few are aware of wishes of those closest to them • Seen as not in the public eye in comparison to other health campaigns • Lack of first hand experience of organ donation (process/ giving consent) • Top of mind association is living donation 54% haven’t seen any recent publicity about organ donation NHSBT | Organ Donation 2013| July 2013 | CONFIDENTIAL 4 Q14. Have you ever talked with anyone about organ donation? Base: All Nat Rep (1007)

5. Religion influences BME support for organ donation… But understanding of official standpoint of religion is fairly limited • While 80% of BME sample are religious • Only13% said that they thought organ donation was against their religion / the teachings of their faith Religious profile of those who think donation is against their religion/ faith Qualitatively, most Hindus and Sikhs view donation positively: it is perceived to be another form of charity and most believe the body isn’t needed after life QD11. What is your religion? / Q03b2. Which of the following apply to you when thinking about whether you would consider donating your organs after death? Base: BME Boost(542) NHSBT | Organ Donation 2013| July 2013 | CONFIDENTIAL 5

6. 3 in 10 unable to agree outright if they have never spoken about the deceased’s wishes The power of prior discussion cannot be underestimated Q23a/b/ Q26a/b. Below are some situations where people have had to make difficult decisions. Please read through each of them and say whether you think you would agree or not if you were in that situation yourself. Base: All Nat Rep (1007) NHSBT | Organ Donation 2013| July 2013 | CONFIDENTIAL 6

7. Most barriers are consistent between those who refuse and those who are unsure But anticipated feelings of guilt are more common if unable to agree Top barriers to agreeing without prior verbal or ODR consent Become unsure without consent (29%) Become unable to agree without consent (30%) Q28c. You said that you wouldn’t agree / you’re not sure if you would agree to your family member/ close friend’s organs being donated if they hadn’t signed up to the NHS ODR and you hadn’t personally discussed their wishes. Why might you not agree? Base: Nat Rep: Become unsure without consent (308), Become unable to agree without consent (278) NHSBT | Organ Donation 2013| July 2013 | CONFIDENTIAL 7

8. The approach • Research • Understanding current attitudes and behaviours • Understanding what we need to do

9. Join versus donate Age: Gen pop. vs ODR vs donors (2012 – 2013) Those on the ODR differ demographically to those who are called on to donate Source: NHSBT/ODR

10. Learnings from others

11. DVLA and messaging Reciprocal altruism still the best performing message Loss aversion more powerful than hope Social norming disappointing

12. The approach • Research • Understanding current attitudes and behaviours • Understanding what we need to do • The strategy – a direction of travel http://www.nhsbt.nhs.uk/to2020/about-the-strategy/changing-behaviour/

13. The strategy • Three objectives: • To increase the number of people on the ODR by at least 50% by 2020 (from a baseline of 20m in 2014), rebalancing it towards people who are older (50+) and from DE socio-economic groups • To stimulate conversations and debate about donation, particularly through leveraging the ODR as a marketing tool • To present donation as a benefit to families in end-of-life and grieving process • Framework of 20 specific actions

14. The mission Families consent to Organ Donation on behalf of their loved ones Do: Register their wishes And talk about their decision Behaviour Change Think: Organ donation is normal Feel: Pride in saving lives

15. Strategic shifts • Conversation and debate • Educating families • Local and targeted • Normalising donation • Understanding the impact of all interventions Existing UK Wide activity: Apply strategic shifts Proposed new activity Robust trials

16. Campaign plan > UK-wide activity Existing and funded activity: • Digital – websites, social media, • Content strategy addressing motivations and barriers • National partnerships • Faith Action Plan • National Transplant week • Materials - leaflets, banners, stands, promotional items • Donor card to first time registrants (85k per month)

17. 1. Digital • 100k visits a month and growing • 30% conversion rate, varies by referrer DVLA (60%) / Google (20%) • 30% of total visits on a mobile – not responsive • Another 4 sites and microsites • Organically grown Organ Donation social media presence • 110k Facebook likes and 13k twitter followers We must focus on improving our core service Then, write better content that meets the needs of other users, rationalise the websites into one Validate and capture data

18. 2. Content strategy ‘Like’ Feel: Relationship building content. Community spirit. Pride to be part of a life saving team Trust Care Team Advocate Volunteer Commitment Conversation Awareness Register Consent Re-affirm Conversation Consideration Think: If I needed a transplant would I take it? Donation is a normal thing to do. Do: Sign up, and complete donation Create a service so good people want to use it Our current focus is on the behavioural interventions up to here, but we need to refine and go further into conversion funnel

19. 3. National Partnerships Under-represented groups Premier League / FA vInspired - Festivals Muslim Council Weight Management HOME / Place for People ECB Hindu Council Co-operative SAGA Post Office Government Prompted Choice TFL HM Passport services National Citizens service Health: EHIC / NHS Pensions Electoral Commission HMRC Existing ‘hero’ Boots NHS Choices WI GP Prompted Choice Technology / Products Vodaphone Health apps Do: Sign up to the register Tell your family and friends Think: Donation is a normal thing to do. Feel: Pride to be part of a life saving team

20. Campaign plan > UK-wide activity Existing and funded activity: 4. Faith Action Plan 5. National Transplant week 6. Materials - leaflets, banners, stands, promotional items 7. Donor card to first time registrants (85k per month)

21. Campaign plan – trial approach • Areas of activity: • Current level as a baseline • Isolated, one intervention only – Dec • Hot house, all interventions – Jan onwards

23. Campaign plan – new activity • Developing a relationship management programme • Trialling re-carding re-registrants & supporting new channels • Targeted acquisition of new registrants • Targeted digital media • Expanded use of the organ donation card • Local partnerships • Education materials

24. Campaign plan – March onwards • Religious text on organ donor card • Donor card equivalents – apps • Order of St John Award – national ceremony • Donor cards for re-registrants

25. 86 86 86 86 86 86 86 86 72 72 72 72 72 72 72 72 95 95 95 95 95 95 95 95 83 83 83 83 83 83 83 83 95 95 95 95 95 95 95 95 82 82 82 82 82 82 82 82 57 57 57 57 57 57 57 57 97 97 97 97 97 97 97 97 91 91 91 91 91 91 91 91 88 88 88 88 88 88 88 88 75 75 75 75 75 75 75 75 66 66 66 66 66 66 66 66 88 88 88 88 88 88 88 88 58 58 58 58 58 58 58 58 92 92 92 92 92 92 92 92 76 76 76 76 76 76 76 76 73 73 73 73 73 73 73 73 94 94 94 94 94 94 94 94 89 89 89 89 89 89 89 89 95 95 95 95 95 95 95 95 78 78 78 78 78 78 78 78 61 61 61 61 61 61 61 61 86 86 86 86 86 86 86 86 88 88 88 88 88 88 88 88 89 89 89 89 89 89 89 89 86 86 86 86 86 86 86 86 72 72 72 72 72 72 72 72 98 98 98 98 98 98 98 98 75 75 75 75 75 75 75 75 100 100 100 100 100 100 100 100 72 72 72 72 72 72 72 72 78 78 78 78 78 78 78 78 86 86 86 86 86 86 86 86 74 74 74 74 74 74 74 74 92 92 92 92 92 92 92 92 74 74 74 74 74 74 74 74 78 78 78 78 78 78 78 78 89 89 89 89 89 89 89 89 92 92 92 92 92 92 92 92 93 93 93 93 93 93 93 93 76 76 76 76 76 76 76 76 64 64 64 64 64 64 64 64 95 95 95 95 95 95 95 95 85 85 85 85 85 85 85 85 91 91 91 91 91 91 91 91 75 75 75 75 75 75 75 75 65 65 65 65 65 65 65 65 84 84 84 84 84 84 84 84 63 63 63 63 63 63 63 63 94 94 94 94 94 94 94 94 DBD DBD 75 75 75 75 75 75 75 75 66 66 66 66 66 66 66 66 89 89 89 89 89 89 89 89 76 76 76 76 76 76 76 76 92 92 92 92 92 92 92 92 76 76 76 76 76 76 76 76 National DBD rates National DBD rates 69 69 69 69 69 69 69 69 90 90 90 90 90 90 90 90 78 78 78 78 78 78 78 78 BSD testing (%) BSD testing (%) 52 52 52 52 52 52 52 52 96 96 96 96 96 96 96 96 68 68 68 68 68 68 68 68 92 92 92 92 92 92 92 92 Consent/ Authorisation (%) Consent/ Authorisation (%) Referral (%) Referral (%) 79 79 79 79 79 79 79 79 93 93 93 93 93 93 93 93 SN-OD involvement (%) SN-OD involvement (%) Approach (%) Approach (%) Figure 1: Key rates on the DBD donation pathway, by ODST Figure 1: Key rates on the DBD donation pathway, by ODST Proposed evaluation framework Quarterly and by DBD/DCD: • Consent rate • Referral rate • Approach with SNOD • % on the ODR • Family interest rate (from PDA) Example

26. Funding • Reduced campaign spend to fund increased operational activity • £800k for UK wide activity • National approach to campaigning, 2014/15 budgets • England - £500k £0.01 pp (proposed) • Northern Ireland - £250k £0.14 pp • Scotland - £250k £0.05 pp • Wales - £808k £0.26 pp