1. Promoting patient-centred healthcare around the world IAPO, CHAIN, UNHCO and JFSCU are pleased to welcome you to a workshop on: Patient-Centred Healthcare: Aligning Healthcare Systems with Patients’ Needs Monday 3 November 2008 Kampala, Uganda

2. Promoting patient-centred healthcare around the world IAPO would like to acknowledge the support of our workshop supporting organizations and sponsors: Supporting organizations: Workshop sponsors: Pharmaceutical Research and Manufacturers of America Community Health and Information Network (CHAIN) Uganda National Health Consumers/Users’ Organization (UNHCO) Joyce Fertility Support Centre (JFSCU)

3. Promoting patient-centred healthcare around the world About IAPO and background to this workshop Unique global alliance of national, regional and international groups representing patients Established in 1999 Crossing borders and diseases Vision: Patients throughout the world are at the centre of healthcare Representing an estimated 365 million patients worldwide www.patientsorganizations.org

4. Promoting patient-centred healthcare around the world IAPO’s Membership 200 member organizations Membership spans 40 countries and all world regions Representing an estimating 365 million patients International Alzheimer’s Disease International Multiple Sclerosis International Federation Arthritis and Rheumatism International Regional Latin American Cystic Fibrosis Federation European Organization for Rare Disorders (EURORDIS) Community Health and Information Network CHAIN (Great Lakes Region of Africa) National Alliance for Patients’ Mutual Help Organizations (Hong Kong) New Zealand Organization for Rare Disorders Cancer Patients Association of Slovenia American Diabetes Association

5. Promoting patient-centred healthcare around the world IAPO’s Mission 1. Realizing active partnerships with patients’ organizations, maximizing their impact through capacity building 2. Advocating internationally with a strong patients’ voice on relevant aspects of healthcare policy, with the aim of influencing international, regional and national health agendas and policies 3. Building cross-sector alliances and working collaboratively with like-minded medical and health professionals, policy makers, academics, researchers and industry representatives We work towards our vision of patient-centred healthcare by: Advocacy Capacity Building Partnerships

6. Promoting patient-centred healthcare around the world IAPO’s Values Accessibility: IAPO is committed to ensuring that the work it does is accessible to its members and partners. Accountability: IAPO is accountable to its membership through our Annual General Meeting (AGM) and our Governing Board, elected by the members. The Board is the accountable body for IAPO and staff report directly to them. Commitment to Diversity: We recognise and celebrate the diversity within IAPO’s membership. We realise the challenges that this commitment brings given language barriers, cultural difference, the differing resource levels of organizations and the global disparity in access to healthcare. Yet, we are committed to working in a way in which all patient-led organizations can be actively involved with IAPO, contributing their own unique perspectives.

7. Promoting patient-centred healthcare around the world IAPO’s Values Inclusiveness: IAPO strives to be inclusive in all its work. We work with our members and our Board to ensure that IAPO’s services, events and membership structure are as inclusive as possible. Independence: IAPO is a patient-led organization independent of government, industry and other professional organizations. IAPO’s strategic direction is set by our members through our Governing Board. Representation: IAPO strives to be fully representative of patients’ needs and views. Given the diversity of IAPO’s membership, we recognise the challenges this entails. We ensure that consultation with members is an integral part of our work including undertaking an annual survey of members’ needs and using all this information to guide future projects and accurately represent our members at an international level. Transparency: IAPO strives to have clear processes for its work including its decision-making processes, utilising its website and other appropriate communication tools. IAPO also has an open, transparent framework to guide its funding agreements. IAPO works in partnership with a number of organizations; all formal partnerships are governed by clear and transparent guidelines.

8. Why patient-centred healthcare? Promoting patient-centred healthcare around the world

9. Why ….Cont’d Promoting patient-centred healthcare around the world

10. Aims of the workshop 1. Introduce and discuss IAPO’s vision of patient-centred healthcare with patient groups 2. Explore the patient perspective on what patient-centred healthcare means to patient groups in Africa working in different countries and disease areas 3. Develop our capacities to promote patient-centred healthcare through presentations, sharing of case studies, provision of tools and facilitated exchange 4. Develop supportive networks between like-minded patient groups in Africa and initiative working relationships between patient groups and other healthcare stakeholders (policy-makers, health professionals, industry representatives, academics and others) 5. Identify potential strategies and actions for patient groups and for IAPO to promote patient-centred healthcare regionally and globally

11. Promoting patient-centred healthcare around the world Workshop Overview - Morning 9.30-10.45Introduction to the day, welcoming remarks and outline of meeting Chair: Myrl Weinberg, Chair of the Board, IAPO and Robinah Kaitiritimba – 10.45-11.00Introduction to Patient-Centred Healthcare Jo Groves, CEO, IAPO 11.00-11.30Break 11.30-12.30What difference would Patient-Centred Healthcare make to your patients? (Robinah Kaitiritimba and Ella Fearon-Low, Capacity Building Director, IAPO) 12.30-13.30Lunch

12. Promoting patient-centred healthcare around the world Workshop Overview - Afternoon 13.30-13.50What difference would Patient-Centred Healthcare make to the patients I work with? Continued 13.50-14.15Collaborating for positive change: Case Study Robinah Kaitiritimba 14.15-15.30Collaborating to advocate (Durhane Wong-Rieger – IAPO Board Member and Ella Fearon-Low) 15.30-15.40Working with IAPO towards Patient-Centred Healthcare (Myrl Weinberg and Esther Thompson – Membership and Events Coordinator, IAPO) 15.40-16.00Taking our messages forward (Jo Groves and Jeremiah Mwangi - Senior Policy Officer, IAPO) 16.00 Workshop End

13. Promoting patient-centred healthcare around the world Workshop – Getting to know each other and what we want to get out of today? Tell your group one thing about yourself Tell your group one thing you hope to get out of today

14. Promoting patient-centred healthcare around the world An Introduction to Patient-Centred Healthcare Jo Groves, Chief Executive Officer IAPO Workshop 3 November 2008 Kampala, Uganda

15. Promoting patient-centred healthcare around the world Content of Presentation IAPO’s principles of patient-centred healthcare Patient perceptions of healthcare Patient-centred healthcare in practice

16. Promoting patient-centred healthcare around the world What is patient-centred healthcare? Patient-Centred Healthcare Principles Respect and support for the individual patient, their wants, preferences, values, needs and rights Choice and empowerment Patient engagement in health policy www.patientsorganizations.org/involvementwww.patientsorganizations.org/involvement Access and support Information that is accurate, relevant and comprehensive www.patientsorganizations.org/healthliteracy IAPO Declaration on Patient-Centred Healthcare can be accessed online at: www.patientsorganizations.org/declaration www.patientsorganizations.org/declaration The essence of patient-centred healthcare is that the healthcare system is designed and delivered so that it can answer the needs of patients

17. Promoting patient-centred healthcare around the world Why patient-centred healthcare? Research Evidence – There is growing evidence of the benefits of its practice (including patient quality of life, improving physiologic measures and increasing efficiency of use of healthcare services) See ‘What is Patient-Centred Healthcare?: A Review of Definitions and Principles’ Available online: www.patientsorganizations.org/pchreviewwww.patientsorganizations.org/pchreview Patients support for a patient-centred approach – An IAPO survey* in 2006 into the perceptions of healthcare of 1200 patient group members in 12 countries** found that patients had concerns relating to healthcare and favoured a patient-centred approach. * The survey was undertaken by Consensus Research and supported by Pfizer Inc. ** The countries included in the survey were: UK, Germany, France, Hungary, Austria, Czech Republic, Italy, Spain, Belgium, Sweden, Canada, Nigeria.

18. Promoting patient-centred healthcare around the world IAPO Study: Patients’ Organizations Members Perceptions on Healthcare Objective - To provide an objective insight into patient organisation members’ perceptions on the state of healthcare, future concerns, and reactions to government healthcare policies. Survey Methodology The study was undertaken in 2006 with 1200 members of patients’ organisations in 12 countries* Random sampling of publicly available lists of patients’ organizations followed by random digit dialling The study results: demonstrated strongly shared views on the needs and concerns of members related to currently administered healthcare signalled a need for a shift to a more patient-centred approach to healthcare identified three recurring themes that illustrate shared concerns related to: timely access to the best treatment and information the right to participate in decisions at the individual patient level patient involvement in policy-making * UK, Germany, France, Hungary, Austria, Czech Republic, Italy, Spain, Belgium, Sweden, Canada, Nigeria

19. Promoting patient-centred healthcare around the world Where patients stand on healthcare issues Where key healthcare issues are concerned, members of patients‘ organizations express their strongest agreement with the need for: accurate, relevant and comprehensive information for patients and their caregivers, to help them make informed decisions about treatment [98%, 78%] ensuring access to necessary services, treatments and preventive care [97%, 77%] patient-centred healthcare policies that respect their unique needs, values and independence [95%, 66%] Agreement on healthcare positions Q7. Would you say you strongly agree, agree somewhat, disagree somewhat or strongly disagree with each of the following statements?

20. Promoting patient-centred healthcare around the world What patients want from their healthcare system Members of patients’ organizations assign top priority to: access to the treatment they and their doctors believe is best for them [81%] reducing delays and waiting times for appointments and treatments [76%] reducing paperwork so that doctors can spend more time with patients [67%] Importance Ratings % Top 4 Box [7, 8, 9, 10 on 0-10 Scale] Q5. How would you rate the importance of each of the following healthcare proposals or issues to you personally, on a scale from 0-10, with l0 meaning that it’s very important to you personally, and 0 meaning not at all important?

21. Reducing delays and waiting times for patients to get appointments and treatments Creation of a coalition representing key stakeholders such as patient organizations, health care providers, scientific societies, educators and pharmaceutical companies that participates in the development of health care policies and decisions Public conferences and lectures created through a partnership between patient advocacy groups and health care professionals targeting both individuals and patient groups that provide information on personal wellness and disease prevention Health guides, created and provided by patient groups, that help families maintain accurate health records, follow their doctor's prescriptions and recommendations, and provide information about nutritional, exercise and lifestyle choices Engaging patients in health care policy decision-making to ensure that policies reflect patient and family caregiver needs A partnership between a patient advocacy group and a government health care agency to create policy that would positively affect the treatment of all patients with a certain condition or disease within a fixed budget Nigeria Q5. How would you rate the importance of each of the following health care proposals or issues to you personally, on a scale from 0-10, with l0 meaning that it’s very important to you personally, and 0 meaning not at all important? % Top 4 Box [7, 8, 9,10 on 0-10 scale] 45 Promoting patient-centred healthcare around the world

22. Nigeria [Continued] Enlisting leading experts on health care to develop new programs and policies for governments to follow to improve the quality of health care across all countries Introducing a computerized central health information system with appropriate safeguards so that doctors, hospitals and heath care providers have access to a patient’s medical history, to provide vital information in case of an emergency or help prevent the prescription of medicines that might have harmful side effects Reducing paperwork for physicians so that they can spend more time with patients Enabling patient-centered decision-making by providing both a platform for input and voting rights to relevant patient representatives in your community Ensuring that patients have access to the treatment that they and their doctors believe is best for them, including the newest medicines, medical devices and procedures Allowing patient-centered decision-making by giving relevant patient representatives input and voting rights on cost-containment issues like health technology assessment and the substitution of similar medicines in place of medicines specifically prescribed by your physician Q5. How would you rate the importance of each of the following health care proposals or issues to you personally, on a scale from 0-10, with l0 meaning that it’s very important to you personally, and 0 meaning not at all important? % Top 4 Box [7, 8, 9,10 on 0-10 scale] In order to ensure access to new medicines for all people, increasing the co-payment for patients who can afford it 46 Promoting patient-centred healthcare around the world

23. International Patients for Patient Safety - WHO World Alliance for Patient Safety Ensuring patient involvement in patient safety initiatives Regional and National Workshops and resources Over 100 patient advocates trained worldwide National Patients Rights Law 2004, Cyprus Patient Information and Empowerment, Uganda Family Health Teams, Ontario, Canada Promoting patient-centred healthcare around the world Patient-centred healthcare and patient engagement in practice

24. Promoting patient-centred healthcare around the world Conclusions The strain on healthcare systems is a massive global problem The best way to achieve patient-centred healthcare is with an approach based on strong values of respect, partnership and equity – no patient-centred healthcare without cooperation of all stakeholders Meaningful patient engagement must be central to efforts to refocus health systems on people and patients Together we can… working together we have the potential for positive change for the benefits of patients around the world

25. Promoting patient-centred healthcare around the world What difference would patient-centred healthcare make to the patients I work with? Access –Patients have access to healthcare services warranted by their conditions. Access to safe, quality and appropriate services, treatment, preventive care and health promotion activities. Information –Patients receive accurate, relevant and comprehensive information to enable them to make informed decisions about healthcare treatment and living with their condition. Involvement –Patients and patients’ organizations would share the responsibility of healthcare policy-making through meaningful and supported engagement in all levels and at all points of decision-making, to ensure that they are designed with the patient at the centre. Safety –Healthcare would be safe and the current threats to patient safety such as: the cleanliness of hospitals, the risk of receiving counterfeit or substandard medicines or being harmed by care would be reduced.

26. Promoting patient-centred healthcare around the world Questions for group work Working in your small groups please take it in turns to talk about an example from your experience that relates to the issue in the corner that you are in. Please use the questions listed below to guide your discussion. We will let you know when it is time to move on to the next issue. 1.Give an example of a time when this issue affected the patients you work with? 2. How have you addressed this issue?

27. Promoting patient-centred healthcare around the world Workshop Overview - Afternoon 13.30-13.50What difference would Patient-Centred Healthcare make to the patients I work with? Feedback session 13.50-14.15Collaborating for positive change: Case Study Robinah Kaitiritimba 14.15-15.30Collaborating to advocate (Durhane Wong-Rieger – IAPO Board Member and Ella Fearon-Low) 15.30-15.40Working with IAPO towards Patient-Centred Healthcare (Myrl Weinberg and Esther Thompson – Membership and Events Coordinator, IAPO) 15.40-16.00Taking our messages forward (Jo Groves and Jeremiah Mwangi - Senior Policy Officer, IAPO) 16.00 Workshop End

28. Promoting patient-centred healthcare around the world Feedback session: What difference would Patient- Centred Healthcare make to the patients I work with? 1.Give an example of a time when this issue affected the patients you work with? 2. How have you addressed this issue?

29. Promoting patient-centred healthcare around the world IAPO Workshop on Patient-Centred Healthcare 3 November 2008 Kampala, Uganda Getting your message across – collaborating to advocate Durhane Wong-Rieger Chair, Consumer Advocare Network & IAPO Board Member

30. Promoting patient-centred healthcare around the world Session Outline Advocacy in Action: An example Advocacy Workshop – Group work Defining your message – Defining your stakeholders Defining what we want to achieve What advocacy strategies can I employ to achieve my outcomes Feedback from group work – Are there any key messages we want to take to the IAPO seminar

31. Promoting patient-centred healthcare around the world SMALL GROUP: BIG PROBLEM Problem: No funding for rare disorder Canadian Environment Drugs funded but not for all conditions Rare diseases = Very expensive drugs Fabry’s: only 300 patients in Canada Government doesn’t pay attention

32. Promoting patient-centred healthcare around the world ADVOCATING for Fabry’s in Canada (1) Raised Awareness through Personal Stories Patient approaches Opposition Health Critic Personal stories profiled in media Group Activism National Patient group National media

33. Press conference, demonstration lead to opportunity to present case to Common Drug Review (cost-effectiveness body) Press conference leads to meeting with Health Minister Support from Medical Professional Groups, Ethics, Drug Conferences Case presented to Decision Makers Promoting patient-centred healthcare around the world

34. ADVOCATING for Fabry’s in Canada Encouraged Individual (Radical) Activism Patients refused to leave hospital without treatment; law suite Public Campaign: 1200 letters in 2 weeks TV, radio, newspapers Demonstration staged at Health Ministers Annual Conference

35. ADVOCATING for Fabry’s in Canada Meetings with politicians and decision makers Numerous meetings with Health Ministers and Drug Plan advisors Pressure made this key issue at Health Ministers Annual Conference Result in promise of funding through “research protocol” Promoting patient-centred healthcare around the world

36. ADVOCATING for Fabry’s Treatment Started with Individual Stories Company agrees to compassionate access for individual patients Individual families approach their parliamentary representatives Opposition Health Critic becomes champion and continuously raises issue in legislature

37. ADVOCATING for Fabry’s in Canada Media becomes engaged On own and with PR firm, generate press releases and stories Local and national papers pick up stories about impact on patients, family Selected journalists become champions; create newspaper series on orphan diseases, including Fabry’s, and their treatment. Promoting patient-centred healthcare around the world

38. Summary of Fabry Strategies and Tactics Strategy: Generate widespread support for issue and credibility Strategy: Make issue real; put personal face on it Tactic: Take individual stories public Tactic: Engage support of significant media and decision makers Tactic: Engage support from similar and diverse others Tactic: Demonstrate widespread impact and public support

39. Promoting patient-centred healthcare around the world Summary of Fabry Strategies and Tactics Strategy: Engage “insiders” who influence or make decision – Tactic: Leverage connections to engage help of political aids – Tactic: Take issue to committees, hearings, parliamentary sessions – Tactic: Engage opposition parties to advocate internally

40. Promoting patient-centred healthcare around the world Summary of Fabry Strategies and Tactics Strategy: Engage “third-party” experts to support issue Tactic: Organize forums or conferences to discuss issue Tactic: Engage medical experts, ethicists, academics to support Tactic: Embed issue in broader social or political agenda; “rights”

41. Promoting patient-centred healthcare around the world ADVOCACY MODEL Best Outcomes Win-win solution, commitment to change Legitimacy with Decision Makers Credibility Among Consumers (Public)

42. Promoting patient-centred healthcare around the world ADVOCACY: LESSONS LEARNED 1. Get Their Attention; It’s the Sizzle That Sells 2. Make Them Care; Engage Them Emotionally 3. An Effective Demonstration Needs Numbers; Make It Politically Worthwhile to Solve the Issue 4. Engage Influential Insiders to Support Issue; Better Yet, Get a Seat at the Table 5. Row Together; Find Common Ground; Watch Out for “Divide and Conquer”; Keep Everyone Informed and Engaged 6. Let Others (Without Vested Interest) Speak For You; Make Solving the Issue the “Right Thing” to Do 7. Small is Good; Don’t Forget: David Won 8. When You Get to the Top, Don’t Forget to Send the Elevator Back Down

43. Promoting patient-centred healthcare around the world Group Work (2-5 people) What are your key messages? Define your stakeholders Who do you serve? Who do you want to influence? What do you want to achieve? What are your key outcomes? What advocacy strategies can I employ? 10 minutes per question

44. Promoting patient-centred healthcare around the world Together we can… Esther Thompson IAPO Membership & Events Coordinator

45. Membership activities - IAPO works to build the skills and capacity of its members through sharing resources, specialist toolkits, and twinning. - IAPO provides a platform for shared advocacy with a strong patient voice including opportunities for members to participate in policy activities at national, regional and international levels Promoting patient-centred healthcare around the world Advocacy Capacity Building Partnerships

46. Global Patients Congress  Member led capacity building sessions  Plenary sessions and workshops bringing together patients representatives, policy makers, health professionals, researchers and industry  3 rd Global Patients Congress, organized by patients around the world, held in Budapest Feb 2008- www.patientsorganizations.org/congress www.patientsorganizations.org/congress Promoting patient-centred healthcare around the world

47. Participation in healthcare policy making at an international level IAPO Meeting on Patient-Centred Healthcare 30 March 2007 – UN New York, USA

48. Exchanging ideas and sharing resources  IAPO Twinning Service A framework for two organizations to work together to share expertise for their mutual benefit The Patients' Exchange Resource Shares Covers eight main topic areas of relevance to patients' organizations worldwide: Advocacy, Basics, Collaboration, Communications, Fundraising, Patient Services, People and Policy Formulation. Promoting patient-centred healthcare around the world

49. In-depth briefing papers, policy statements and toolkits Briefing Papers & policy statements Patient Safety Toolkit to be launched 3 November 2008, Uganda Promoting patient-centred healthcare around the world

50. Some conclusions We share common issues and concerns nationally, regionally and globally As groups representing patients, we all strongly believe that meaningful patient engagement must be central to efforts to improve healthcare and that we, as patient representatives have a valuable contribution to make Together we can – We hope you will join IAPO’s global patients’ movement so we can do this together. IAPO can provide support for your work and ensure patients in Africa are represented in global healthcare policy.

51. Promoting patient-centred healthcare around the world Taking our work forward IAPO can facilitate networking and exchange between patient groups in Africa IAPO will produce a report on this workshop and seminar, which can be used to inform our work but also to advocate for patient-centred healthcare What messages do we want to take forward to the mutli- stakeholder seminar? (Access, Information, Safety, Involvement)

52. Promoting patient-centred healthcare around the world Taking our work forward What messages do we want to take forward to the mutli- stakeholder seminar? Access Involvement Safety Information

53. Contact us Please visit our website to find out more: www.patientsorganizations.org/membership www.patientsorganizations.org International Alliance of Patients’ Organizations 703 The Chandlery 50 Westminster Bridge Road London SE1 7QY United Kingdom Tel: +44 20 7721 7508 Fax: +44 20 7721 7596 Email: info@patientsorganizations.orginfo@patientsorganizations.org Website: www.patientsorganizations.orgwww.patientsorganizations.org Promoting patient-centred healthcare around the world