Communication & Social Media: Building an online voice and working smart in a digital world. Denis Costello and Rob Camp

Transcription

1 Communication & Social Media: Building an online voice and working smart in a digital world Denis Costello and Rob Camp June 2015

2 What I hope you will take away today: Tools to create a voice Lots of examples from patient organisations The power of social media Techniques for working smart

3 Meet Paco

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9 Lessons from Paco You can be an ambassador for your cause Use your mobile phone Internalise your cause Introduce your personality into your message

10 Examples of ambassadors Dave debronkart Blog: Alfonso Aguarón Blog: Kate Bushby

11 Example II

12 Clear and captivating

13 Clear and captivating

14 Clear and captivating

15 Clear and captivating

16 findacure.org.uk

17 Clear and captivating

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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 A successful tryptique : live broadcast / TV show 40 M 1987 : creation of a volunteers network 36 M 2002 : development of Internet strategy 18 M (94 M )

21 The French Telethon : a unique event A «new media» ambitious development 20 % of donations via Internet «friends» on Facebook 1 million ing adresses a mobile strategy specific e-partners

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... The French Telethon : in a few words... A powerful lever for patients and families

23 Clear and captivating

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 Meaningful difference 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.

26 Constants and Variables Dynamic leadership Passive leadership Ruggedness Sophistication v v Integrity & Nurturance

27 Exercise in positioning 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?

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 Typical campaigns or messages Access Campaign (Treatment, Care, Social Services) Advocacy Campaign Awareness Information (e.g. to Doctors) Fundraising

31 Be and think Multi-Channel Social media is now central to your communication strategy Being multi-channel enables you to reach people in new ways

32 Example channel combinations: 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

33 Example : Access to Treatment 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

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35 Microsite

36 Example : Advocacy 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

37 Advocating for policy change

38 Example : Social Media Only Campaign Light and agile Cost effective Potential for viral impact

39 Facebook profile pics:

40 Example : Awareness Campaign 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

41 Blue Lips Campaign for Pulmonary Hypertension

42 Being SMART It s easy right?

43 Example : Crowdfunding 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

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 Tools Hootsuite.com (Social Media listening and scheduling) Google Alerts Google Adwords for Non Profits Google Analytics

47 Thanks if you d like to contact me www denis.costello@