BJD 2009 INTERNATIONAL PATIENT ADVOCACY MEETING

1. BJD 2009 INTERNATIONAL PATIENT ADVOCACY MEETING 21 October 2009 Washington, DC

2. Agenda

3. INTERNATIONAL PATIENT ADVOCACY SEMINAR Brian Tjugum, Weber Shandwick John Lotspeich, Weber Shandwick

4. Learning objectives AT THE CONCLUSION OF TODAY, PARTICIPANTS WILL: • Understand the basic framework of communications planning • Know how and where public affairs/lobbying can be used • Be able to deliver compelling messages to key stakeholders

5. STRATEGIC COMMUNICATIONS PLANNING What communications can do for you How communications planning is done Where public affairs / lobbying can help you

6. Communication programmes are designed to: • Inform Influence Prompt action Professionals Patients Policy-makers Public

7. Communications planning steps • Set your goals • What do you need to accomplish? • Define your audiences • Whom do you need to reach? • Identify key messages • What do your audiences need to hear? • Define strategies/tactics • How will you communicate with them? • Evaluate your success • How will you monitor progress?

8. Communications planning steps • Set your goals • What do you need to accomplish? • Define your audiences • Whom do you need to reach? • Identify key messages • What do your audiences need to hear? • Define strategies/tactics • How will you communicate with them? • Evaluate your success • How will you monitor progress?

9. Goal: What do you need to do? ?

10. Strategy: Which route do you take to do it?

11. Strategy: Which route do you take to do it?

12. Tactic: How exactly will you get there? TO new york

13. But don’t forget to think about your audience! TO Mom’s house for christmas

14. Communications planning steps • Set your goals • What do you need to accomplish? • Define your audiences • Whom do you need to reach? • Identify key messages • What do your audiences need to hear? • Define strategies/tactics • How will you communicate with them? • Evaluate your success • How will you monitor progress?

15. Mapping your audiences is important

16. Communications planning steps • Set your goals • What do you need to accomplish? • Define your audiences • Whom do you need to reach? • Identify key messages • What do your audiences need to hear? • Define strategies/tactics • How will you communicate with them? • Evaluate your success • How will you monitor progress?

17. What are key messages? • 3 most important points about your subject you want to convey • Supported by proof, evidence or arguments • They are: • Clear – it’s understood by your audience(s) • Credible – it’s believed • Persuasive – it changes thinking • Actionable – it motivates a response

18. Communicating your positioning The Story Who BJD is Key messages ensure consistent communication of messages to all audiences. These messages represent your identity (what you believe), actions (what you do) and results(the benefits you deliver). Together they form one overall messaging framework, with the story supported by clear and concise support messages Supporting message 1 What BJD believe Supporting message 2 What BJD do Supporting message 3 What BJD deliver

19. An example of one organization’s story The World Heart Federation leads the global fight against heart disease and stroke via a united community of nearly 200 member organizations The World Heart Federation believes that all hearts are equal regardless of community, country or continent ,and that the standards of cardiovascular care and disease prevention must be raised to achieve this The World Heart Federation builds global commitment to addressing CV health at the policy level, generates and exchanges ideas, shares best practice and advances scientific knowledge to tackle the world’s number one killer Through our collective efforts, we can help people all over the world to lead longer, better, heart healthy lives

20. Communications planning steps • Set your goals • What do you need to accomplish? • Define your audiences • Whom do you need to reach? • Identify key messages • What do your audiences need to hear? • Define strategies/tactics • How will you communicate with them? • Evaluate your success • How will you monitor progress?

21. Standard strategies – integrated communications Medical education Publicaffairs Public relations

22. Evaluation: outcomes management Leverage the Knowledge Design the Outcome Buildthe Team Control the Dialogue Drive the Campaign Assess the Outcome • Know what we want • Strategic • Measurable • Attainable • Relevant • Time specific • Choose the right team • Skills • Regions • Industry • Relations • Use what we know • Research • Needs of builders, buyers, influencers and funders • Gaps and drivers • Managing the message • 5 steps of planning • Planning roadmap • Sharing and driving • Tools and processes for team-work and project management • Reviewing and measuring results • Tailor the right solution for reviewing the outcome

23. What evaluation can give you • A record of your activities that can be used by others • A methodical analysis of successes and challenges in the programme • A tool that can be used to engage policy makers, funding agencies, partner organisations and the media • More credibility with stakeholders

24. INTRODUCTION TO PUBLIC AFFAIRS:HOW TO APPROACH POLICY-MAKERS

25. What is Public Affairs? • PA is about managing institutional relationships • PA involves establishing and nurturing relationships with key influencers, decision makers and policymakers Public affairs is the discipline which looks after relationships, with the aim of creating alliances to undertake mutually-beneficial activities and achieve common goals.

26. What does lobbying mean in your country? Open forum discussion

27. 2. Identify decision makers and key influencers at the Local level 3. Influence the debate at the national level LocalLevel 1. Target key officials, who can influence the debate at the National level National Level 4. Create info flow back to help influence debate at a regional level Regional Level Lobbying = Stakeholder engagement at all levels

28. Break

29. Agenda

30. HOW TO CHANGE HEALTH PRIORITIES A Framework for Lobbying Case studies

31. Generate best care environment for those who can benefit from medications • Prevention • Screening • Diagnosis • Treatment • Management • Patient involvement • Ensure stakeholders/decision-makers understand wider benefits of cost-effectiveness • Engagement climate • Ethical Standards • Codes of Conduct • Advocacy presence • Stakeholder Perceptions • Economic Climate • Cost Containment • Taxation • Pricing • Access • HTA • Ensure access for those patients most in need of effective treatment • Parallel Trade • Supply Chain Integrity • Global Access Programs Three strategic themes for Public Affairs (An HIV EXAMPLE)

32. Immediate Mid-Term Long Term Shape the environment to accomplish core mission • Optimal Care • Prevention • Screening • Diagnosis • Management • Treatment • Patient involvement Achieve Optimal Care Environment for patients • Global Access Program • Cost Effectiveness • Taxation • Pricing • Access • HTA • Engagement Climate • Advocacy ignition • Stakeholder Alliances Ensure access to patients most in need Understanding of cost-effectiveness

33. Identify desired change in environment Stakeholders involved Crafted SMART objective Strategies Key Tactics Resource Requirements Insert Text Here Insert Text Here Insert Text Here Insert Text Here Insert Text Here Insert Text Here

34. Case Study:Fit for Work and Fit for Work Europe

35. MSDs in Europe • MSDs cost the EU over €240 bn per year (2% of GDP) • 100 m Europeans live with a chronic MSD • 44m of these are in the workforce • Health systems tend to focus on ‘incapacity’ rather than ‘capacity’ • Early detection and treatment are key to keeping people healthy (and in work)

36. Fit for Work conceived as a way of moving MSDs up the European agenda Fit for Work aims to make MSDs a priority of the European Union and Member States and to advocate and potentially harmonise early intervention and treatment practices across the continent. “DETECT EARLY TREAT EARLY”

37. Aligning agendas: To maximise opportunities and audience reach across Europe Fit for Work Campaign Productivity/ Competitiveness Agenda Health in Work Agenda HEcon and Outcomes Research Agenda Quality of Life/Social Inclusion Agenda Policy makers Large Employers, Business associations, Trade Unions, Think tanks Payors, Patient groups, Healthcare providers, Academic institutions Multilateral organisations, Foundations, Patient and HC groups Patient Organisations, Trade Unions, Think tanks, Healthcare providers Detect Early Treat Early

38. Influencing policy agenda items Strategic objective White Paper “Together for Health” Obtain insertion and mention of MSD in EP report Health Work Programme Obtain mention of appropriate, early intervention as priority under the health promotion strand of the work programme Short term Council Recommendation on assessment of and early intervention on MSD Obtain document EU Employment Guidelines Obtain and insertion and mention in guidelines Work-related MSD Directive Project Obtain insertion on early intervention and assessment Longer term Heath policy Employment policy (Health & Safety at work)

39. Launching ‘Fit for Work’ campaign in Brussels • Campaign platform created to prioritise musculoskeletal disorders (MSDs) • Six months prior to launch, began lobbying activities to lay groundwork for campaign launch • As a result, secured launch speakers from European Commission, European Parliament, Belgian Ministry of Labour, president of EULAR and Swedish presidency of EU • Call to Action for Early Diagnosis and Intervention launched in European Parliament • Lobbying activities supported by PR and social media to provide background commentary

40. Identify desired change in environment Stakeholders involved Crafted SMART objective Strategies Key Tactics Promote early diagnosis and intervention of MSDs Policy-makers, healthcare professionals, patient associations, business/labor By end of 2010, to include MSDs in proposed European policy vehicles Partner with key stakeholders to build evidence base for why MSDs should be prioritized on health policy agendas Study commissioned through research organization Integrated comms programme: lobbying, digital, media

41. http://www.fitforworkeurope.eu/ FfW: online

42. Public Affairs • In order to navigate the political landscape effectively, you must map it – both who (stakeholders) and what (issues) • Think about what goals you might have in common with other organisations, with the political agenda, with other influencers • Public affairs is just ONE strategy – link activities to other campaign elements for maximum impact

43. Exercise: Mapping Local Issues • What political issues are currently “hot topics”, under debate, receiving attention in your country? • Is prevention a key priority for health services? • Is early intervention acknowledged as important? • What are the main challenges to accessing appropriate treatment? • Is access to healthcare services under debate? • Are patients empowered – do they have a voice in the debate? • Work in groups of three to test your thinking

44. Best practice:Chris Bossley, New Zealand

45. Summary • Work from a simple, focused objective  Tie it to data/information – start from an evidence base • Align your agenda with existing ones  Think about alliances of advocates • Know exactly whom to speak to and target one audience  Map your stakeholders, get to know them • Deliver a compelling story that is both rational & emotional  Craft simple, credible, persuasive* messages * Policy-makers respond to cost-savings/cost-effectiveness

46. INTRODUCTION TO BREAK-OUT SESSIONS

47. Agenda

48. Instructions for the exercise • Sit in the group you want to work on: • A. Educate HCPs to recognise early signs and symptoms of MSDs and make appropriate diagnoses and referrals • B. Educate HCPs to recognise early signs and symptoms of MSDs and make appropriate diagnoses and referrals • Inform decisionmakers that early intervention in paediatric MSDs has a positive impact on society • Persuade decisionmakers that prevention is better than correction and shift resources accordingly • Expand access to best treatment options for patients with MSDs • Prioritise MSDs on national/international health research agendas • Identify a facilitator and a scribe • Craft the public affairs plan: • 1. discuss one SMART objective • 2. who matters the most in solving the problem? • 3. how are you going to reach them? • 4. what are you going to say?

49. Report backs • YOUR OBJECTIVE • YOUR AUDIENCE • YOUR TACTIC • YOUR 3 MESSAGES

50. Arthritis Foundation Amy Melnick