Tweeting from the top

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Deborah Alsina, Bowel Cancer UK
PR in the digital age conference
www.charitycomms.org.uk/events

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  • I’m no guru or twitter phenomenon and my twitter feed isn’t worthy of great citation but it has helped the charity. so I’m appyto share what I’ve learnt and how I’ve benefitted to date. I’ve also got a lot wrong and I’m happy to share that too.
  • To achieve this we do 3 key things:We raise awareness of the diseaseWe provide information and support to patientsAnd we lobby and campaign – because we believe that patients should have access to the best treatment and care wherever they live in the UK.We are relatively small charity but we are very ambitious?
  • That’s because Over 40,000 diagnosed – around 45% die within 5 yearsThat’s nearly 16,000 people every year in the UK, making it the UK 2nd biggest cancer killer (more than either prostate or breast cancer)One of problems is that awareness of the disease is way too low / people know but don’t act upon their concerns
  • That’s one of the reasons I started to use social media. 1) Vague obsession about discovering new ways of communicating about the disease and what messages would really resonate. – 2) Because when I became CEO 4 and half years ago, I knew nothing about social media yet the charity used facebook & twitter. - sceptical of the amount of time it took. But given my communications obsession felt I had to understand better. After all you can’t input, led alone lead a strategy if you don’t ‘understand something so I decided to do something about my ignorance3) I was also pushed… our comms manager persuaded me that some people might follow me rather than charity & that has been true.Now use the following channels professionally…..
  • As I knew nothing about Twitter I did ask ‘experts’ and other tweeters and received lots of contradictory advice…….- Left me entirely bemused and just a little bit scared! So followed a number of charities to understand what they did. I then compared what we, as a charity, did against that. We had less than 1000 followers and actually I concluded that we didn’t do it particularly well but then at the time we had one member of staff in comms. So how could we. Therefore I decided to start tweeting to help her.
  • In the beginning I asked lots of experts other tweeters for advice. Much contradictory. (be useful, have an online work personality, broadcast, have conversations etcetc)I was left bemused and just a little bit scared so got lots wrong! For example……I ended up tweeting either too much or too little and soon realised I couldn’t do everything. Decided to simplify it all and to focus my target audience.
  • Who did I settle on? well based on the charity’s needs – to focus upon….Worth mentioning I’ve put in a lot of effort into this (generally early mornings, evenings and weekends) and as a result I’m now very much part of the bowel cancer community on twitter – which is quite active. By being clearer about who I was aiming at, actually I’ve built genuine relationships with people (much to my surprise) and my twitter followers slowly but surely are increasing. I.
  • What do I gain? Well for me the most important thing is insight into patient experience and motivation.
  • Over the last 3 years I’ve builtstrong relationships with lots of patients, including all these… (Keith, Paul, Chris, Emma, Katie, Lindsey, Adrian, Laura, Tony. ) Yet sadly too many of them, including all of these have died.Yet by sharing their journeys I’ve gained much better understanding of every stage of the bowel journey. From diagnosis to survivorship to end of life care and bereavement. For example, my twitter friend Neil, lost his wife Lindsey to bowel cancer in her 50s, described the human impact movingly to me…
  • Through twitter, numerous DMs, I walked with them as Lindsey’s condition deteriorated, I felt both their fear and desperation and Neil’s emotional turmoil losing his beloved wife.
  • So how does that insight help? Well by understanding patients experience of diagnosis, treatment and care I can see trends and leit motif’s and we can translate those individual stories into powerful recommendations for change.I guess very personally I find talking to patients and their families incredibly moving and motivating. It drives me to try just that little bit hardertofind the breakthrough we need to really save lives. After all preventable, treatable and curable.
  • Twitter also gives me other things too. It’s a great place to test ideas, see reaction, consult on priorities which I can then feed into the charity’s strategy and plansIdeas – e.g. fundraisingTwitter is also a wonderful place to get an abridged version of health policy and people’s views for latest newsI’ve used it for networking and even recruited my dear skydive partner Nikki through it (she didn’t expect that when she followed me!)
  • In addition… to all that the charity gains from my twitter feed too.
  • Most important question is there any value for patients? I’m not promoting this for everyone, just my approach, but I have spent quite a lot of time on&offline, connecting people, listening, caring because it can be such a lonely frightening time. I’ve even organised patient ‘tweetups’ which have been great fun. But I did recently ask them if there was any value and did it enhance or detract from their view of BCUK….. Good positive response.
  • I thought I would give some examples of how it can work for everyone and why I believe its worth engaging.
  • This is a lovely pic of Katie and Stuart Scarbrough and their children. I met them both on twitter.Katie, a former Junior National ice skating champion, was diagnosed with advanced stage 4 bowel cancer at the age of 30. She was inoperable but did have various types of palliative chemotherapy.Katie blogged very movingly about cancer and how it had affected her and her family.
  • This is Katie during her chemotherapy. She particularly hated – in her words ‘looking like a cancer patient’. Katie was desperate to live yet knew there was little hope. We talked about it a lot in private via twitter and by email and phone conversations. For me she summed up how she felt very movingly, in her blog. Expressing what so many feel.
  • By spending time getting to know her, by listening, by empathising, we developed a relationship. As a resultKatie turned her desperation into action and became a supporter of our Never Too Young campaign and did lots of extremely powerful radio and newspaper interviews. Her aim was simple, she wanted to raise awareness so others would not be diagnosed too late. Sadly Katie died on the 2nd May last year year aged just 32.
  • After Katie died, Stuart, her husband and I fulfilled one of her bucket list wishes and appeared on This Morning.Stuart was brilliant – its not really something he’d have wanted to do but he did it to help me/us with the campaign. This morning weren’t in the least interested in me on my own as a charity worker but he insisted he wouldn’t do it unless I was included. It worked. There was an amazing response to the programme on both This Morning’s website and the charity’s/ our own facebook/twitter pages. It of course allowed us to get our key campaign messages to a much wider audience and Stuart felt he was doing something important for his wife.
  • Staying with Never Too Young – in fact some of its origins were in twitter. Over the year’s met many young bowel cancer patients on & off line. Whilst only 5% of bowel cancer patients are under the age of 50 (2,100) our research has shown that they have a different, less positive experience of diagnosis, treatment and care. It would of course be relatively easy to get media hits on tragic cases of beautiful dying young mothers like Katie but we actually wanted to make change. We therefore embarked on a piece of research which included focus groups (all the participants were recruited through my twitter contacts) and online surveys, promoted in part via twitter – as well as traditional desk research and consultation with clinicians, academics and policy makers.Along with publishing a report, we also made three films and a campaign film – all twitter contacts of mine.I also launched a fundraising campaign by throwing myself out of a plane!
  • Campaign was brilliantly received because we’d taken time to listen and understand. I’m rather proud that patients & their families felt engaged and a sense of ownership and policy makers are slowly taking notice. This slide just highlights the great first month.
  • I want to leave you with a quote from one of my twitter friends Charlotte who was diagnosed at 31.
  • I reckon if by spending time on social media helps Bowel Cancer UK save lives then its time well spent.
  • Any questions?
  • Tweeting from the top

    1. 1. Tweeting from the top! PR in the Digital Age A Charity Comms Conference February 2014 Charity of the Year 2013/2014 by Deborah Alsina @Deborahalsina Bowel Cancer UK @bowel_cancer_uk
    2. 2. What I’m going to talk about •Introduction to bowel cancer in the UK & Bowel Cancer UK •How I started – what I’ve got right/wrong •What I / the charity/ bowel cancer patients gain •Some examples of positive outcomes due to social media Charity of the Year 2013/2014
    3. 3. Who we are & what we do Bowel Cancer UK is determined to save lives and improve the the Year Charity of quality of life for all 2013/2014 those affected by bowel cancer
    4. 4. Bowel cancer today Incidence 1,156 people per year Mortality 403 people per year Incidence 3,967 people per year Mortality 1,501 people per year Charity of the Year 2013/2014 Incidence 33,218 people per year Mortality 12,905 people per year Incidence 2,354 people per year Mortality 899 people per year
    5. 5. Why and what ? Why? - To explore ways of communicating about the disease - To understand social media & its value - Because I was pushed! Charity of the Year What? •Twitter 2013/2014 •LinkedIn •Blogs
    6. 6. What I was told… • • • • Succinct policy tweets only Engage in conversation Share information Separate your work twitter personality from your personal self • Be yourself - ensure you are authentic Charity of the Year 2013/2014
    7. 7. The beginning • • • • • • I wasn’t clear about my audience Wasn’t clear what I should tweet Nervous about my online personality Felt anxious when I was unfollowed Followed too many people Tweeted too much/too little Charity of the Year 2013/2014 • Result: STRESS!
    8. 8. My target audience • Those closely affected by the disease • Supporters of Bowel Cancer UK • People interested in bowel cancer (including health policy experts and clinicians) Charity of the Year (Secondary: other charity professionals) 2013/2014 Also follow: • News sources
    9. 9. What do I gain from twitter? Insight & motivation Charity of the Year 2013/2014
    10. 10. Why does it ma
    11. 11. Neil “The whole journey of losing a partner and best friend is very odd. At first the shock protects you a little. Then you throw yourself into work with unbelievable mania just to avoid thinking about it. Charityon hasthe Year The of reality kicked in. Only now 10 months loneliness is awful, the sense of there being no purpose 2013/2014 to anything any more is high I am sure this is all part of the process but it is such a painful part”
    12. 12. Shared experience Aims to: Charity of the Year 2013/2014
    13. 13. What else? • Immediate reaction & consultation • Ideas • Health policy abridged • News in a flash • Networking - even gained a skydive partner Charity of the Year 2013/2014
    14. 14. What does the charity gain? • Supporters, media case studies, volunteers • Amplify key messages & promote engagement • A human ‘face’ rather than simply a logo Charity gives the charity a human face & of the Year “Definitely a positive thing instant contact when people are most in need” Karen 2013/2014 “Reason I got involved” Rachel `Makes me feel much more connected to the charity and wanting to help you change things` Charlotte
    15. 15. Any value for patients? `having bowel cancer or knowing someone that does can be a lonely place, even now it is comforting. Keep up the fantastic work!` Simon Charity of the Year 2013/2014 `Patients are often in a desperate situation and you have buckets of compassion and a huge desire to change things, which comes across.. Is very positive effect for Bowel Cancer UK` Paul `Dawn and I really appreciated your kindness and support in our darkest hour` Dave
    16. 16. When it works Charity of the Year 2013/2014
    17. 17. Charity of the Year 2013/2014
    18. 18. What does Twitter give Charity of the Year 2013/2014
    19. 19. Katie “Cancer has taken everything away from me and I hate it. I hate that it’s making me bitter and emotional, I hate that it’s given me no hope, I hate that it’s made me weak and dependant on people and, most of all, I hate that it’s going to take me away from my kids and family.” Charity of the Year 2013/2014
    20. 20. This Morning Charity of the Year 2013/2014
    21. 21. #Never2Young Charity of the Year 2013/2014
    22. 22. #Never2Young: launch month 55 case studies Campaign films – nearly 4000 plays 164 radio and TV interviews, 39 pieces of national and local press, Substantial online press coverage #Never2Young – used in 2,651 tweets, reaching c.141,351 people Website visits – Up Helpline calls - up Charity of the Year 2013/2014 (Since launch: £100K income)
    23. 23. • In summary • Highly recommend engaging in twitter • Be yourself • Define your audience & how that helps your charity meet its mission • Integrate it into your marketing & communications strategy. • Don’t just broadcast, talk to people • Don’t let it stress you out! Charity of the Year 2013/2014
    24. 24. I can’t wait to: ... wake up and not have cancer as my first thought ... be able to dye my hair! ... get all dressed up and dance all night ... feel like 'me' again … have the energy to be a better Mummy … be able to wash my hair and not see loads of it in the bath tub … watch my beautiful little girl grow up ... experience my healthy and exciting future Charlotte Charity of the Year 2013/2014
    25. 25. Thank you Charity of the Year Deborah Alsina Chief Executive 2013/2014 Deborah.alsina@bowelcanceruk.org.uk 020 7940 1768 @deborahalsina

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