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Online Communication I
Rob Camp, 21 Nov 2015#eupatientsforum #eupatients
#patientsinvolved#rareconnect
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
Links Communications is outreach is advocacy
All rights reserved.
The Good Cop–Bad Cop Strategy1988
Internal negotiations were held with government officials and the pharmaceutical industry, and simultaneous direct action.
All rights reserved.
Information & Education1989…
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.
All rights reserved.
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
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
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Changing the paradigm
We do it in research, treatments, health
Shouldn’t we demand it of ourselves?
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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...)
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Strategic plan (Exec Summary) Elevator pitch Mission statement SWOT Goals KPIs (monitoring and evaluation)
Strategic plan Target (who?) State of affairs for NGOs Marketing plan Who is on your team? (Do you have a
team?) Operations plan Projections
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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
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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)
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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)
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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
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
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 Skills28
2009 2010 2011 2012 201340%
45%
50%
55%
60%
65%
70%
75%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
Use of social media in Europe
Growth and raw numbers: bigger in Central/Eastern Europe than Western Europe*
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
What branding is not…
WHAT should the messages be about?
01/05/2023
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
WHAT?
01/05/2023
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
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
01/05/2023 35
Avoid acronyms
DG SANCOEHREPF
HTAEMPATHY EUPATIJA PASQ
AdHopHTA...
Patient Expert CourseCertified training course, for…Sitting on committees, research teams, etc...Journalists, opinion leadersTeaching patients to better work in their communities and their networks
European Patients‘ Academy
100 patient reps
12,000patient reps
100,000persons
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
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)
Other European Patients’ Academy
messagesPor, 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)
Message
Patients teach / Patients LearnUNDERSTAND
National comms plans
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)
Online Communication II
PEW Research Center
eHealth http://www.slideshare.net/PewInternet/201
3-7-26-13-rise-of-epatients-medical-librarians-la-jolla-pdf?utm_source=slideshow03&utm_medium=ssemail&utm_campaign=share_slideshow_loggedout
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”
Options?
Intro to Retweet Reply Lists @katyperry, #commontheme Whotofollow
ENGAGE ENGAGE ENGAGE
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
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
600M Europeans have internet access, 300M have a FB account http://www.internetworldstats.com/europa.
htm
FB ads
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
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
skype Telephone system
Free International With free videos Can share screens Can have multiple callers participate
http://www.skype.com/en/
Light and agile
Cost effective
Potential for viral impact
Social Media Campaigns
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
kickstarter
Helping groups raise fundsCrowdfunding campaign for Ectodermal Dysplasia
Facebook profile pics:
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
Hootsuite.com (Social Media listening and scheduling)
Google Alerts
Google Adwords for Non-Profits
Google Analytics
Tools
KPIs Google analytics Website hits Website returns Website downloads
Comments? Interactivity?
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
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
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
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
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