communication & social media

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

denis.costello@eurordis.org

+34 663 092 790

@rarecare

ThanksAnd if you’d like to contact me

www www.rareconnect.org