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.

1. Online
Communication I
Rob Camp, 21 Nov 2015
#eupatientsforum #eupatients #patientsinvolved
#rareconnect

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

3. Links
 Communications is outreach is advocacy

4. All rights reserved.

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.

7. All rights reserved.

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

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

11. Graphics

12. Changing the paradigm
 We do it in research,
treatments, health
 Shouldn’t we demand it of
ourselves?

13. Graphics

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...)

15. Graphics

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

18. Graphics

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

20. Graphics

21. Communications
strategy steps
 Talk to key stakeholders – constituents - about
SWOT (and anything else!, partnerships, KPIs,
geography)
 What does an ideal future look like?
 Prioritize elements, develop objectives
 Develop & prioritize strategies & tactics
 Metrics (KPIs), timelines, responsibilities
 Details and implementation (then re-evaluation and
re-strategizing)

22. Graphics

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)

24. Graphics

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

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

31. What branding is not…

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

36. Avoid acronyms

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)

40. Message
Patients teach / Patients Learn
UNDERSTAND

41. National comms plans

45. European Patients’ Academy Comms
Budget
 Budget – 0 – 265,000€
 Travel, accom, catering – 7.5K
 Online communications - 47K
 IT – 35K
 Admin – 4K
 Comms group, newsletter, messaging, social media – 15K
 Video editing – 10K
 Translation – 52K
 Local teams – 60K
 Contingency – 35K (Russian, Polish, German)

46. Online Communication II

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”

49. Options?

50. Intro to
 Retweet
 Reply
 Lists
 @katyperry, #commontheme
 Whotofollow
 ENGAGE ENGAGE ENGAGE

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

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

57.  Apps, blogs, surveys, skype, hootsuite

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

62. kickstarter

63. Helping groups raise funds
Crowdfunding campaign for Ectodermal Dysplasia

64.  Facebook profile pics:

65. One year/one minute
http://youtu.be/3axx9mMQgLU

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

67. AKU – Findacure

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

69. KPIs
 Google analytics
 Website hits
 Website returns
 Website downloads
 Comments? Interactivity?

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