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Online Communication

Online Communication IRob Camp, 21 Nov 2015#eupatientsforum #eupatients #patientsinvolved#rareconnect

Strategic CommunicationsExploring the links between communications and advocacy workCommunications for patient organisations: how to gain visibility with a limited capacity?Understanding your target audienceDefining your key messagesDefining your Key Performance IndicatorsDefining your objectives and action plan in relation to your budget

LinksCommunications is outreach is advocacy

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The Good CopBad Cop Strategy1988 Internal negotiations were held with government officials and the pharmaceutical industry, and simultaneous direct action. All rights reserved.

5ACT UP held massive protest at the FDA to protest drug development. 180 are arrested in civil disobedience-as a result 6 months later the FDA speeds up the drug development process.

Information & Education1989The 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.

6Compassionate use policy began in response to the need of access to experimental gancyclovir for CMV.Huge protests at the AIDS conference in SF where doctors joined the gay pride march to protest the governments response to AIDS.ACT UP stopped trading at the NY stock Exchange to protest the high price of AZT. The price was lowered as a result.

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Treatment AdvocacyCommunity must have representation in government, the pharmaceutical industry & research institutionsImportance of treatment education and mentoringUnderstanding (barriers to) treatment development and the regulatory processDevelopment of relationships w/ other stakeholders - companies, regulators, investigators, larger communityContinuing education and trainingsStrategy development-pro-action instead of reaction

Treatment Activism job descriptionAs consumer watchdogs/community consultants, we can ensure ethical and equitable research and accessibilityWork with / monitor sponsors (pharma, research entities, regulatory bodies), scientists, public relations staff, government, the media, politicians


Changing the paradigmWe do it in research, treatments, health

Shouldnt we demand it of ourselves?


Strategic communicationInterdisciplinarity

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...)


Strategic plan(Exec Summary)Elevator pitchMission statementSWOTGoalsKPIs (monitoring and evaluation)

Strengths weaknesses opportunities threats16

Strategic planTarget (who?)State of affairs for NGOsMarketing planWho is on your team? (Do you have a team?)Operations planProjections


Strategic communicationefforts 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


Communications strategy stepsTalk to key stakeholders constituents - about SWOT (and anything else!, partnerships, KPIs, geography)What does an ideal future look like?Prioritize elements, develop objectivesDevelop & prioritize strategies & tacticsMetrics (KPIs), timelines, responsibilitiesDetails and implementation (then re-evaluation and re-strategizing)


Communication managementplanning 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)


Strategic?communicating the best message, through the right channels, measured against well-considered organizational and communications-specific goalsan orchestrated use of channels of communication to move and influence public policy or to promote an agenda (IDEA) Tactical steps like branding

A message can b an argument25

Whats 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 2013Weekly use by disadvantaged people at 60% by 2015 57% in 2013The 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

Use of social media in EuropeGrowth and raw numbers: bigger in Central/Eastern Europe than Western Europe*

*probably partially due to information available in the different languages29

Br & MsgBrandingYour orgs DNA, who you arePURPOSE, VALUES, PROMISEMessagingBelievable, memorable, consistent


What branding is not

WHAT should the messages be about?21/11/15Raise awareness (living with XYZ) (14)Stories (10), preferences, online coaching (2)patients, caregivers, doctorsNews (5) and facts (2), guidelines, best practicesaccessibleFunding calls (4)Disseminate results (4)Specific problems and needs (2) and proposals for action, define XYZ, finding a cure 33



Health improvements (4)Do YOU have a disease? (2)Messaging and supportShow how to get involvedAlign with eventsDebate and discussion (incl. generation of new info) on social, political and ethical implications of research, recruitment and engagement of research participants and broader stakeholders34


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, animatedBe interactive, share (2)NewsflashesCooperating globally (2)Press releases (2)Other like PR for TV, etc21/11/1535

This includes youtube and blogs35

Avoid acronyms



Patient Expert CourseCertified training course, forSitting on committees, research teams, etc...Journalists, opinion leadersTeaching patients to better work in their communities and their networksEuropean Patients Academy100 patient reps12,000patient reps100,000persons

ToolboxEducational tools for patient repsLots of formats: Reports (papers), PP presentations, online teachings: webinars, vdeos, etc

Public library and news onlineContents for patients and the general public about specific parts of the development process Wiki, YouTube, vdeos, cartoons


European Patients Academy key messagesMy knowledge is my wellness/wellbeing/healthWithout you there is no research: without research there are no new treatmentsKnow your medicines

#eupatients & #patientsinvolved(#pacientesespaolesinvolucrados)

Rate the messages 1-5Would this message work in your country?Could you improve on this message?Do you need different messages for different audiences?Might you survey your membership to agree on national messages?38

Other European Patients Academy messages

Por, para y con el paciente [Spain] By, for and with the patientPatient 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(#pacientesespaolesinvolucrados)

MessagePatients teach / Patients Learn


National comms plans

European Patients Academy Comms BudgetBudget 0 265,000Travel, accom, catering 7.5KOnline communications - 47KIT 35KAdmin 4KComms group, newsletter, messaging, social media 15KVideo editing 10KTranslation 52KLocal teams 60KContingency 35K (Russian, Polish, German)

Online Communication II

PEW Research CentereHealth

Slides 11, 12, 17, 22, 25

As of September2014:71% of online adults use Facebook23% of online adults use Twitter26% use Instagram28% use Pinterest28% use LinkedInSocial Networking Fact SheetHighlights of the Pew Internet Projects research related to social networking.(Note: This page will be updated whenever new data is available.)As of January2014, 74% of online adults use social networking sites.


Social media is n