This document discusses strategic communications for patient organizations. It explores how to gain visibility with limited capacity through defining key messages, target audiences, objectives, and performance indicators. It provides tips on communications strategies like using multiple social media channels and customizing messages for different audiences. Budget considerations and options for online tools, campaigns and measuring success are also covered.
2. Strategic
Communications
Exploring the links between communications and
advocacy work
Communications for patient organisations: how to
gain visibility with a limited capacity?
Understanding your target audience
Defining your key messages
Defining your Key Performance Indicators
Defining your objectives and action plan in relation to
your budget
5. The Good Cop–Bad Cop
Strategy
1988
Internal negotiations were held with government officials
and the pharmaceutical industry, and simultaneous direct
action.
All rights reserved.
6. Information & Education
1989…
The activists who met on the “inside” developed
educational tools in the form of documents,
backgrounders, and critical reviews on the AIDS
research infrastructure. They sponsored town
forums to educate the community.
8. Treatment Advocacy
Community must have representation in government, the
pharmaceutical industry & research institutions
Importance of treatment education and mentoring
Understanding (barriers to) treatment development and the
regulatory process
Development of relationships w/ other stakeholders -
companies, regulators, investigators, larger community
Continuing education and trainings
Strategy development-pro-action instead of reaction
9.
10. Treatment Activism –
job description
As consumer watchdogs/community
consultants, we can ensure ethical and equitable
research and accessibility
Work with / monitor sponsors (pharma, research
entities, regulatory bodies), scientists, public
relations staff, government, the media,
politicians
14. Strategic communication
Interdisciplinarity
Social media does not have to be expensive
target audiences - specific occupations and can be
stratified by age, educational levels, demographics,
interests, roles/relationships, etc. Many people fall
into multiple audience categories (gen public, curious
people, school kids, university kids, journalists and
bloggers, pros, insiders...)
16. Strategic plan
(Exec Summary)
Elevator pitch
Mission statement
SWOT
Goals
KPIs (monitoring and evaluation)
17. Strategic plan
Target (who?)
State of affairs for NGOs
Marketing plan
Who is on your team? (Do you have a team?)
Operations plan
Projections
19. Strategic communication
efforts to understand and engage key audiences to
create, strengthen, or preserve conditions favorable
based on research for the advancement of (patient)
interests, policies, and objectives through the use of
coordinated programs, plans, themes, messages,
and products synchronized with the actions of all
instruments at hand (website, social media,
newsletters, etc)
Cover further stakeholder groups: government
officials, regulatory bodies, (medical) journalists,
healthcare professionals
23. Communication
management
planning and realization of information flow,
communication, media development and image
care over the long-term
Balances three factors:
the message(s),
the media channel(s)
the audience(s)
25. Strategic?
communicating the best message, through the
right channels, measured against well-
considered organizational and communications-
specific goals
an orchestrated use of channels of
communication to move and influence public
policy or to promote an agenda (IDEA)
Tactical steps like branding
26. 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
27.
28. Our Target
Weekly use of the internet at 75% by 2015 72% in 2013
Weekly use by disadvantaged people at 60% by 2015
57% in 2013
The number of internet users in the population continues
to increase, with 72% of the EU population reporting that they
used the internet at least weekly in 2013.For most people, use
of the internet is a daily activity, with 62% of EU citizens
reporting using it daily in 2013. Use by disadvantaged people
also continues to rise; with 57% reporting using the internet at
least weekly in 2013. This steady increase in internet use of the
EU population suggests that the Digital Agenda targets on
internet use will be met by their target date of 2015.
72% of EU population uses the internet weekly …
Most of EU population (62%) uses the internet every day.
Digital Agenda Scoreboard 2014 – Digital Inclusion and Skills
28
40%
45%
50%
55%
60%
65%
70%
75%
2009 2010 2011 2012 2013
Internet use in the EU: Daily Internet use in the EU: Weekly
Daily and weekly use of internet in the EU (% of population)
Source: EUROSTAT
29. Use of social media in
Europe
Growth and raw numbers: bigger in
Central/Eastern Europe than Western Europe*
30. Br & Msg
Branding
Your org’s DNA, who you are
PURPOSE, VALUES, PROMISE
Messaging
Believable, memorable, consistent
2013 03 03
BRAND_IDENTITY_EUPATI_FINAL.pdf
33. WHAT should the messages be about?
21/11/2015
Raise awareness (living with XYZ) (14)
Stories (10), preferences, online coaching (2)
patients, caregivers, doctors
News (5) and facts (2), guidelines, best practices
accessible
Funding calls (4)
Disseminate results (4)
Specific problems and needs (2) and proposals for
action, define ‘XYZ’, finding a cure
33
34. WHAT?
21/11/2015
Health improvements (4)
Do YOU have a disease? (2)
Messaging and support
Show how to get involved
Align with events
Debate and discussion (incl. generation of new
info) on social, political and ethical implications of
research, recruitment and engagement of research
participants and broader stakeholders
34
35. HOW can we message?
All social media (11) (whatsapp groups)
Regularly (4), (w/ caution, ingenuity, and scientific rigor)
Websites (3)
Text, photos, videos (3)
Fun, engaging, visual, attractive, animated
Be interactive, share (2)
Newsflashes
Cooperating globally (2)
• Press releases (2)
• Other like PR for TV, etc
21/11/2015 35
37. Patient Expert Course
Certified training course, for…
Sitting on committees, research teams, etc...
Journalists, opinion leaders
Teaching patients to better work in their communities and their
networks
European Patients‘ Academy
100
patient reps
12,000
patient reps
100,000
persons
Toolbox
Educational tools for patient reps
Lots of formats: Reports (papers), PP presentations, online
teachings: webinars, vídeos, etc
Public library and news online
Contents for patients and the general public about specific
parts of the development process
Wiki, YouTube, vídeos, cartoons
38. European Patients’
Academy key messages
My knowledge is my wellness/wellbeing/health
Without you there is no research: without research there
are no new treatments
Know your medicines
#eupatients & #patientsinvolved
(#pacientesespañolesinvolucrados)
39. Other European Patients’
Academy messages
Por, para y con el paciente [Spain] By,
for and with the patient
Patient input for better medicines
[Switzerland]
No research for us, without us [UK]
Recruitez les plus, plus vite et mieux
[France] Recruit more patients, faster
and better
#eupatients & #patientsinvolved
(#pacientesespañolesinvolucrados)
47. PEW Research Center
eHealth
http://www.slideshare.net/PewInternet/2013-7-
26-13-rise-of-epatients-medical-librarians-la-
jolla-
pdf?utm_source=slideshow03&utm_medium=ss
email&utm_campaign=share_slideshow_logged
out
48. 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”
51. Customisation is key
320 M active users broadcasting 500 million Tweets / day.
http://www.statisticbrain.com/twitter-statistics/ accessed
today 21.11.2015
Will donate its archive of public messages to the Library of
Congress.
Most journals are on Twitter -
http://twitter.com/NatRevDrugDisc
Adaptive trials receive boost http://bit.ly/d5rkGN a look @
the application of adaptive trial designs to drug
development
https://media.twitter.com/nonprofits
52.
53.
54. The EUPATI Network &
(Social) Media is growing
Journals: TOPRA, Nature Medicine, Journal Med
Dev Science, Regulatory Rapporteur, BioCentury
~1.200 EUPATI Network Members
Each article on front page is read about 5000 x
~1.300 Newsletter subscribers
>1.300 2323 2586 Twitter followers; >1.600 2474
2739 tweets
>900 1225 Facebook friends
>550 806 LinkedIn members
55. 600M Europeans have internet access, 300M
have a FB account
http://www.internetworldstats.com/europa.htm
FB ads
56. Novartis – 1116,849 likes (+8%)
EPF – 5047 likes (+38%)
Leo Messi has 81,215,502 likes (+1,2%)
His last personal message was about Paris
#prayforparis
58. Survey monkey
Free survey system that allows you to
personalise any system of questioning and
produces data good enough that EMA asked us
to present it for them in London
https://es.surveymonkey.net/MySurveys.aspx
59. skype
Telephone system
Free
International
With free videos
Can share screens
Can have multiple callers participate
http://www.skype.com/en/
60. Light and agile
Cost effective
Potential for viral impact
Social Media Campaigns
61. 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
66. blogs
www.eyeonfda.com
https://twitter.com/eyeonfda
He has 10,211 Twitter followers; ha has Resources
and Links and a section on clinical trials
Other blogs – drugwonks.com, pharmalot,
pharmagossip, in the pipeline, clinicaltrialstoday, …
Euro Sites and Blogs – themedicalfuturist.com,
eHealthNews.EU - The First European eHealth News
Portal, NICE, MHRA, EMA, WHO, HIMSS
70. Rules of engagement?
Common courtesy and respect
Transparency
Honesty
EMA rules/requirements?
FDA
“If a firm voluntarily corrects misinformation in a
truthful and non-misleading manner and as
described in this draft guidance…”
Guidance on electronic IC in 2015
71. Do we need to do all this?
“Community” has to have a role, for example, in therapy
development and knowledge production. If we don’t define
and take charge of that role, it will be decided for us.
There are pressing needs of people living with diseases;
research volunteers need to be protected;
even the word “community” is complex;
advocating for specific things in trials (extended clinic hours);
helping to find innovative solutions;
making design & conduct of trials more transparent
72. Eurordis
What can little ol' me do?
https://www.rareconnect.org/en
Connect with others who understand
Learn about research and the latest treatments
Share your own experiences
See what advocacy organizations are doing around
the world
Find helpful resources and information from experts
In 5 languages, today with 47 disease-specific
communities
73. Thank you
Most HIV slides came from Matt Sharp and ATAC,
US.
EPF.
EUPATI.
Denis Costello and EURORDIS.
Esp. to all of you, and my contact is
rob.camp@patientsacademy.eu
