How can the web and social media
support patient associations?
Boomerang Pharmaceutical Communications in collaboration with CF Europe
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Agenda
Introduction and auto evaluation
Customers online behavior and expectations
Trends
Where are you today?
What can the web do for you?
How does WikiCF fit into this?
What’s next?
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To "e" or not to "e" is no longer the question!
4
Understanding
patients’ online behaviour
5
Satisfaction with online info is nearly
as high as for that provided by HCPs
0%
5%
10%
15%
20%
25%
30%
35%
40%
0 2 4 6 8
How satisfied are you with the health or medication information you have received from the following sources?
Doctors
Nurses
Pharmacists
Family and Friends
Television
Radio
Books, Magazines and Newspapers Internet
Source: Cybercitizen® Health Europe v8.0
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The internet is consulted far more
frequently than HCPs for health info
0%
5%
10%
15%
20%
25%
30%
35%
40%
Daily Weekly Monthly Every 2-3 months
2-3 times a year
Once a year
On average, how often would you say you receive health information from each of the following sources?
Doctors
Nurses
Pharmacists
Family and Friends
Television
Radio
Books, Magazines and Newspapers
Internet
Source: Cybercitizen® Health Europe v8.0
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Patients go online at various points in
their diagnosis and treatment
0% 10% 20% 30% 40% 50% 60%
When thinking about switching medications
Had questions about how to take your medication
When deciding between Rx or treatment options
Before going to a scheduled physician appointment
Before you begin taking a new prescription
To assess your risk for a particular condition
After receiving a diagnosis from a physician
When you had symptoms for a condition
During which of the following situations have you looked online for health-related information
Source: Cybercitizen® Health Europe v8.0
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Online health queries have an
important impact on ePatients
0
10
20
30
40
50
60
...affected their decision about how to treat an illness or
condition
...changed their overall approach to
maintaining their health or the health
of someone they take care of
...lead them to ask a doctor new
questions, or to get a second opinion
from another doctor
...changed they way they think about diet, exercise, or
stress management
...affected a decision about
whether to see a doctor
...changed the way they cope with a
chronic condition or manage pain
Perc
enta
ge o
f eP
atients
Their most recent search…
Source: Pew Internet Project: The Social Life of Health Information; June, 2009
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What about mobile?
7% of Europeans who
are online searched
for health info on their
mobile phone
Source: Cybercitizen® Health Europe v8.0
5% sent/received
a text message
from a nurse
5% sent/received
a text message
from a doctor
5% received
health alerts
4% received
prescription
reminders
3% sent/received
a text message
from a pharmacist
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…and that was in 2008; since then,
mobile internet use has nearly
doubled
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A few last tidbits about patients…
61%
"often tell family members and
friends about health information I
have found online that is relevant
to them"
19%
14% Brought printed information from the internet
to their physician for discussion
Regularly contribute or post
health content online
42%
"often change my
behaviour after
viewing health
information online"
31%
"depend on the
internet to make
personal health
decisions"
Visited the product website for a drug that they
were/are taking in the last 12 months
13%
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Trends
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Patients expect, and seek, (second)
opinion(s) to manage their own way
Doctor
Patient (trusting recipient of info)
YESTERDAY TODAY
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Social media
‘The ongoing conversation of the planet’1
500 billion minutes spent on Facebook per month2
25 billion = the amount of content (web links, news stories, blog
posts, notes, photos etc) shared each month on Facebook (= 6x
more than last year!) 2
33% of women (18-34) check Facebook when they first wake up
(even before going to the bathroom)2
4 billion images hosted on Flickr2
1 in 6. = number of mariages last year between people who met
through social media2
1 Kurt Sonderegger, VP marketing, Ploom
2 Source: what the F**k is Social media NOW?
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Where are you today?
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Show who you are and where you are
Your goals are
To support patients and their families
To help to increase disease awareness
lobbying activities
How is the web currently helping you to achieve these
goals?
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Social Maturity Matrix
Maturity
Stage
1 2 3 4 5 Dormant Testing Coordination
Scaling and
Optimizing Empowering
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What can the web do for you?
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Dormant: Not using social media networks
Website
Blog
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Website
People are looking for
disease related
information
Your website will be a
central place on the web
where patients and
caregivers start their
journey to look for
information.
+ : Your are in control of
it’s content.
Cystic Fibrosis
Causes
Symptoms
Carrier
Facts
Life expec-tancy
Treatment
Genetics
Pictures
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Social media
Social media can help you to:
Open the dialogue
Bring visitors to your website
Create awareness for your organisation, the disease, your events
etc
How to get started in the jungle of platforms and channels?
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Tester: Use social media in an anarchistic way
Website
Blog
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Online social network
Number of active users : 900 million (Jan ‘12)
Benefits for you:
Follow events, organizations and people
Your own FB page
Communicate with large number of interested people
Bring visitors to your website
Increase visibility of your association and your activities
Creating awareness
Targeting specific groups (gender, age, fields of interest) to bring visitors to
your website
Linked to other social media platforms
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Examples
NCFS
Vaincre la Muco
Federation Espanola de
Fibrosis Qustica
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Online social network and microblogging service
Max 140 characters
Post, follow or to be followed (Using hashtags #)
Benefits for you
Communicate with large number of interested people about CF,
your association and activities
Follow other groups to gather insights in activities of KOLs in CF
Helps increasing visibility of your website on the web incl social
networks
Short messages (don’t require a lot of time)
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Examples
The Cystic Fibrosis Association of Ireland
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Coordination: Consistency through out all channels
Website
Blog
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Scaling and Optimizing: Use advanced metrics to
measure social media activities impact
Website
Blog
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YouTube
Online video sharing website
One of the most popular web portals
2 billion of videos viewed per day on YouTube2
Benefits for you
Communicate with large number of interested people about CF and
bringing visitors to your website
Creating disease awareness
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Examples
CF Trust
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Online business oriented social networking site.
Connects business contacts and helps exchanging
knowledge, ideas and opportunities with a broader network
of professionals.
Over 120 million members and growing rapidly
95 % of companies using LinkedIn to find and attract
employees
Benefits for you:
Targeting professionals in healthcare (lobbying activities)
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Google +
Online social network aiming to safely share information with the
people of your choice.
Easy segmentation of your audience with circle functionality
Best video chat service available online with hang-outs (Used by
Barack Obama for his campaign)
Deep integration of YouTube
Benefits for you:
Connection with Google search engine: your association will be easily
found
Target specific groups (patients and families) with specific information
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Virtual Pinboard where people share their favorite images.
Huge growth: Pinterest was launched in 2010 and registered
more than 7 million unique visitors in December 2011 (from 1.6
in September)
driving more traffic to organizational websites than YouTube,
Google+ and LinkedIn combined.
Benefits for you:
Post pictures of events, people to increase disease awareness (eg for
lobbying activities)
Creating a community
Bring visitors to your website and to other social media activities
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Free photo sharing program.
You can give your photos a special look.
Hashtags (#) are used to tag photos to facilitate search.
Huge growth:
December 2010 - 1 million users.
April 2012 – 30 million accounts
Benefits for you:
Push images to Facebook or Twitter to optimize your web presence
and to reach more people.
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Empowering: Part of the communication strategy,
linked to off line activities
Website
Blog
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Conclusion
Be present where your patients and their families are.
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Examples outside CF
Can you feel my pain?
Strategy: ‘groundswell of public voice about living with chronic pain
allowing patients and caregivers to express themselves via
whatever channel and in whatever language they felt most
comfortable – from email to social media; using text or images.’
Engage them right where they are.
Facebook, Twitter, Flickr and Online petitions hosted on
Care2 (social action network)
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Another example
Big Blue test for World Diabetes Day supported by Roche:
discover, share blood sugar levels
Sponsored video and donation of insulin to a child every time the
video was watched (= over 126,000 times)
The Diabetes Community took part by bringing as much
attention to the program as possible by using social media
(Twitter)
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Social Maturity Matrix
Maturity Stage 1 2 3 4 5
Dormant Testing Coordination Scaling and
Optimizing Empowering
What does that
mean? Not using social media
Using social media in an
anarchistic way
Have a consistency
through out all the
channels
Use advanced metrics
to measure social media
activities impact, all
assets are linked
Part of the
communication strategy,
linked to off line
activities
Level of
integration No dedicated resources
Shepherd (Social media
champion, not fully
dedicated to this role)
Community manager Leadership team +
Community manager Cultural
What you should
do at this stage?
Listen what your
audience is saying
and run a pilot
Need a Shepherd to
coordinate effort across
platform
Need to develop a full
eCommunication
strategy
Need to think how
offline activities could be
linked to social media
initiatives.
Build valuable
relationship with other
associations and
influencers
What to do next
in order to reach
the next stage?
Identify SMART
(Simple-Measurable-
Realistic-Timely results)
objectives
Develop an editorial
plan for each identified
Target Audience and
channel
Define Objectives and
Metric Strategy
Fully integrate social
media into
Communication plan
Make decision based on
quantitative and
qualitative data
All social media activities need to be linked to your website.
Link all your asset to make sure your website stay the destination of reference for complete information about your organization
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How does WikiCF fit into this?
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WikiCF
Online platform for patients and their caregivers allowing for collaboration
an participation
On WikiCF YOU are controlling the content
WikiCF enables you to
Guide patients to qualitative content, reviewed by you (local Boards)
Start conversations about topics you would like to address
Allow for patients to exchange information (in their own language)
Create a stronger European voice for patient associations, bringing all associations
together on 1 platform.
Create a standard of care throughout Europe
Create an online community of CF patients (members) that can help you in lobbying
activities
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So what’s next?
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So what’s next…?
Focus on your goals; supporting patients and their
families, creating disease awareness and lobbying
activities.
Utilise an arsenal of (digital) tactics with a best
practice approach
Give it a try!
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Thank you!
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Bonus
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How to set up a website
Some links to websites where local patient associations can
easily buy templates/ complete site to start with
Themeforest.net/ elegantthemes.com/
Bustaname.com (domain names)
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Optimize Google ranking of your website
Pay Per Click
Targeted SEM will guarantee
visibility in Google Sponsored
Links spaces and can be used to
boost launch traffic.
Global English Language targeted
Search Engine Advertising (PPC)
based on a keyword list.
Based on a pre selection of key
words related to CF, Boomerang
estimates it to be realistic to aim
for a maximum of 3.000 visitors
generated though a Global
English PPC campaign