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Communication & social media

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Denis Costello & R Camp
EUPATI Dublin 2015

Published in: Health & Medicine
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Communication & social media

  1. 1. Communication & Social Media: Building an online voice and working smart in a digital world 22 April 2015 The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
  2. 2. • Tools to create a voice • Lots of examples from patient organisations • The power of social media • Techniques for working smart What I hope you will take away today:
  3. 3. Meet Paco
  4. 4. • You can be an ambassador for your cause • Use your mobile phone • Internalise your cause • Introduce your personality into your message Lessons from Paco
  5. 5. • Dave deBronkart Blog: http://www.epatientdave.com Twitter: @epatientdave • Alfonso Aguarón Blog: http://blogiadvocate.blogspot.ie Twitter: @alfonsoaguaron • Kate Bushby Twitter: @bushbykate Examples of ambassadors
  6. 6. Example II
  7. 7. Clear and captivating
  8. 8. Clear and captivating
  9. 9. Clear and captivating
  10. 10. Clear and captivating
  11. 11. findacure.org.uk
  12. 12. Clear and captivating
  13. 13. The French Telethon : a human challenge invented by families 5 core objectives  To make rare diseases visible  To heighten public awareness of the rare diseases  To convince government & institutions  To share the knowledges in a pedagogic way  To be accountable (transparency of actions and finances)  to collect
  14. 14. 1987 : live broadcast / TV show 1987 : creation of a volunteers’ network 2002 : development of Internet strategy A successful tryptique 2011 40 M€ 36 M€ 18 M€ (94 M€)
  15. 15. • A « new media » ambitious development – 20 % of donations via Internet – 116 000 « friends » on Facebook – 1 million e-mailing adresses – a mobile strategy – specific e-partners The French Telethon : a unique event
  16. 16. • annual popular appointment • in the core of the evolution of the audio-visual environment • involving all profiles of the society • recognized by government and institutions • offensive media strategy • a brand with key values : – solidarity – efficiency – innovation (research / social / technological) – transparency.....  A powerful lever for patients and families The French Telethon : in a few words...
  17. 17. Clear and captivating
  18. 18. Brand Perception Source: Millward Brown: “Why Brand Personality Matters” See also: The Role of Brand Personality in Charitable Giving, Journal of the Academy of Marketing Science, Vol 33 No 3
  19. 19. • There are ever more patient organisation competing for resources and attention. How can you stand out? We humans tend to compare things to very close alternatives. So a difference, gets our attention. A meaningful difference is one that is considered to be important—one that provides a brand with a meaning that is likely to have an influence on a person’s choice. Meaningful difference
  20. 20. Constants and Variables Ruggedness v Sophistication Integrity & Nurturance Dynamic leadership v Passive leadership
  21. 21. • What’s innovative or different about my group? • Are we straight-forward enough? • Does our mission to care come across? • Are we playful or serious? Exercise in positioning
  22. 22. Brand Perception Source: Millward Brown: “Why Brand Personality Matters” See also: The Role of Brand Personality in Charitable Giving, Journal of the Academy of Marketing Science, Vol 33 No 3
  23. 23. Being SMART… It’s easy right?
  24. 24. • Access Campaign (Treatment, Care, Social Services) • Advocacy Campaign • Awareness • Information (e.g. to Doctors) • Fundraising Typical campaigns or messages
  25. 25. • Social media is now central to your communication strategy • Being multi-channel enables you to reach people in new ways Be and think “Multi-Channel”
  26. 26. • Social Media (SM) Only • SM + Website/Microsite + Tools (e.g. Position Paper, Video etc) • SM + Hybrid Event + Tools • SM + Online Petition • SM + Crowdfunding Additional important tools: - Mass mailing - Advertising (Facebook or Google) - Retargeting Example channel combinations:
  27. 27. • In 2011 the UK Advisory Group for National Specialised Services (AGNSS) recommended the treatment “Eculizumab” for aHUS • However the UK Health Ministers referred the decision to NICE (the UK HTA body) • Eculizumab costs in the region of 480,000EUR anually per patient • The treatment is said to be highly efficacious Example : Access to Treatment
  28. 28. Microsite
  29. 29. • Rare Diseases as an international health priority • Survey of 12,000 patients • Results and Analysis published as book • Presented to EU Health Commissioner on Rare Disease Day • Tools: – Livetweet from event – Videos on Demand – Links to digital pdf of book Example : Advocacy
  30. 30. Advocating for policy change
  31. 31. • Light and agile • Cost effective • Potential for viral impact Example : Social Media Only Campaign
  32. 32. Facebook profile pics:
  33. 33. • The importance of putting a face on the disease • Social Media is one of your best allies • Don’t underestimate the impact of the exercise on your community to help it strengthen its identity Example : Awareness Campaign
  34. 34. Blue Lips Campaign for Pulmonary Hypertension
  35. 35. Being SMART… It’s easy right?
  36. 36. Tips: • Analyse the potential of your membership. They will be the backbone of driving the campaign • Make a video (Keep it simple but impactful) • Front-load the campaign, i.e. have some money in there from the start Example : Crowdfunding
  37. 37. Helping groups raise funds Crowdfunding campaign for Ectodermal Dysplasia
  38. 38. An additional tool: RareConnect.org Collaborate with other patient groups Create an international online patient community
  39. 39. • Hootsuite.com (Social Media listening and scheduling) • Google Alerts • Google Adwords for Non Profits • Google Analytics Tools
  40. 40. EUPATI directory of National Platforms http://enp.eupati.eu Stay up to date with what’s happening in your country
  41. 41. www.facebook.com/denis.costello.79 denis.costello@eurordis.org +34 663 092 790 @rarecare Thanks And if you’d like to contact me www www.rareconnect.org

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