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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.
• 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:
Meet Paco
• You can be an ambassador for your cause• Use your mobile phone• Internalise your cause• Introduce your personality into your message
Lessons from Paco
• Dave deBronkartBlog: http://www.epatientdave.comTwitter: @epatientdave
• Alfonso AguarónBlog: http://blogiadvocate.blogspot.ieTwitter: @alfonsoaguaron
• Kate BushbyTwitter: @bushbykate
Examples of ambassadors
Example II
Clear and captivating
Clear and captivating
Clear and captivating
Clear and captivating
findacure.org.uk
Clear and captivating
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
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€)
• 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
• 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...
Clear and captivating
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
• 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
Constants and Variables
Ruggedness v Sophistication
Integrity & Nurturance
Dynamic leadership v Passive leadership
• 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
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
Being SMART… It’s easy right?
• Access Campaign (Treatment, Care, Social Services)• Advocacy Campaign• Awareness• Information (e.g. to Doctors)• Fundraising
Typical campaigns or messages
• 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”
• 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:
• 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
Microsite
• 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
Advocating for policy change
• Light and agile• Cost effective• Potential for viral impact
Example : Social Media Only Campaign
Facebook profile pics:
• 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
Blue Lips Campaign for Pulmonary Hypertension
Being SMART… It’s easy right?
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
Helping groups raise fundsCrowdfunding campaign for Ectodermal Dysplasia
An additional tool: RareConnect.org
Collaborate with other patient groupsCreate an international online patient community
• Hootsuite.com (Social Media listening and scheduling)• Google Alerts• Google Adwords for Non Profits• Google Analytics
Tools
EUPATI directory of National Platforms
http://enp.eupati.euStay up to date with what’s happening in your country
www.facebook.com/denis.costello.79
+34 663 092 790
@rarecare
ThanksAnd if you’d like to contact me
www www.rareconnect.org
