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Communication & social media
- 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. • 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. Meet Paco
- 9. • You can be an ambassador for your cause • Use your mobile phone • Internalise your cause • Introduce your personality into your message Lessons from Paco
- 10. • 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
- 11. Example II
- 16. findacure.org.uk
- 19. 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
- 20. 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€)
- 21. • 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
- 22. • 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...
- 24. 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
- 25. • 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
- 26. Constants and Variables Ruggedness v Sophistication Integrity & Nurturance Dynamic leadership v Passive leadership
- 27. • 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
- 28. 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
- 29. Being SMART… It’s easy right?
- 30. • Access Campaign (Treatment, Care, Social Services) • Advocacy Campaign • Awareness • Information (e.g. to Doctors) • Fundraising Typical campaigns or messages
- 31. • 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”
- 32. • 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:
- 33. • 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
- 35. Microsite
- 36. • 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
- 37. Advocating for policy change
- 38. • Light and agile • Cost effective • Potential for viral impact Example : Social Media Only Campaign
- 40. • 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
- 41. Blue Lips Campaign for Pulmonary Hypertension
- 42. Being SMART… It’s easy right?
- 43. 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
- 44. Helping groups raise funds Crowdfunding campaign for Ectodermal Dysplasia
- 45. An additional tool: RareConnect.org Collaborate with other patient groups Create an international online patient community
- 46. • Hootsuite.com (Social Media listening and scheduling) • Google Alerts • Google Adwords for Non Profits • Google Analytics Tools
- 47. EUPATI directory of National Platforms http://enp.eupati.eu Stay up to date with what’s happening in your country
- 48. www.facebook.com/denis.costello.79 [email protected] +34 663 092 790 @rarecare Thanks And if you’d like to contact me www www.rareconnect.org