1. Promoting patient-centred healthcare around the world IAPO, AFA, Concebir, Esperantra and fipan are pleased to welcome you to a workshop on: Patient-Centred Healthcare 13 - 14 October 2009 Buenos Aires, Argentina

2. Promoting patient-centred healthcare around the world Welcome from IAPO and our Regional Supporting Organizations Hussain Jafri, IAPO Estela Chardon, Concebir Blanca Mesistrano, Asociación Fibro America Eva Maria Ruiz de Castilla, Esperantra María Cristina Jung, Asociación Argentina de Lucha contra la Enfermedad Fibroquística del Páncreas

3. 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: Concebir Esperantra Asociacion Fibro America the Argentine Cystic Fibrosis Association

4. Promoting patient-centred healthcare around the world Overview of the regional variances in healthcare access and delivery across Latin America Merula Steagall, Associação Brasileira de Linfoma e Leucemia, ABRALE IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

5. Promoting patient-centred healthcare around the world Aims of the workshop The workshop will provide the opportunity for you, as participants, to: 1.Develop your understanding of the issues faced by patients organizations in other countries and disease areas; 2.Build your networks with other patients organizations across Latin America and globally; 3.Understand the work of IAPO, and how the concept of patient-centred healthcare helps us to connect local health issues on the global level; 4.Increase your understanding of how different approaches to decision- making in healthcare affect access to healthcare within Latin America, and can be influenced by patients organizations and; 5.Develop your approach to advocacy, in particular identifying new partnerships or models for advocacy.

6. Promoting patient-centred healthcare around the world Day One Session 1 – Tuesday morning Exploring patient-centred healthcare – locally and globally 09.30-13.00Welcome and introductions Overview of healthcare in the region Group work on key healthcare issues Introduction to IAPO and patient-centred healthcare 13.00-14.15Lunch Session 2 – Tuesday afternoon How are decisions made on what healthcare services and treatments are available? 14.15-17.30Presentations, case studies and group work on different approaches to healthcare decision-making 17.30End of day one

7. Promoting patient-centred healthcare around the world Day Two Session 3 – Wednesday morning Principles of, and approaches to, patient engagement and advocacy 09.30-13.00Presentations, case studies and group work on collaborative approaches to advocacy and partnerships 13.00Lunch Multi-stakeholder Seminar and Reception Wednesday afternoon 15.00-18.00Seminar on Improving Access to Healthcare through Patient Involvement 18.30Reception

8. Promoting patient-centred healthcare around the world Rules of Engagement and Respect 1. Listen when others are talking - Everyone is an expert about their own experience and deserves respect 2. It is OK to disagree - Our goal is to hear and learn from divergent perspectives 3. Do not be afraid to respectfully challenge one another by asking questions - But it is not OK to personally attack a person or organization - Ask yourself how would I want to be treated by someone who disagrees with me?

9. Promoting patient-centred healthcare around the world Rules of Engagement and Respect 4. Keep to your Agreements - Be on time and help the group stay on schedule 5. Keep confidences - Our objective is to grow partnerships based on trust 6. Participate to your fullest ability - Get the most out of the workshop by contributing as much as you can in all the sessions And finally – ENJOY YOURSELF!

10. Promoting patient-centred healthcare around the world Introductions Getting to know each other 90 Seconds per person – beat the bell! Name Organization Country What does your group do for patients?

11. 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.

12. Promoting patient-centred healthcare around the world Questions for group work: How do these healthcare policy issues relate to your work, and affect the patients you 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?

13. Promoting patient-centred healthcare around the world Coffee Break

14. Promoting patient-centred healthcare around the world Questions for group work: How do these healthcare policy issues relate to your work, and affect the patients you 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?

15. Promoting patient-centred healthcare around the world An Introduction to IAPO and Patient-Centred Healthcare Hussain Jafri, Chair, IAPO Regina Namata-Kamoga, Board Member, IAPO IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

16. Promoting patient-centred healthcare around the world About IAPO 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

17. Promoting patient-centred healthcare around the world IAPOs 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

18. 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

19. International Ensuring patient involvement in global policy initiatives and activities Participating in regional and global consultations Meetings and workshops for multi-stakeholder decision-makers Regional and National Regional Workshops (Africa – 2008, Latin America - 2009) Member consultations on policy issues (Patient Safety – 2007, Intellectual Property – 2008, Patient Information – 2009) Support for groups to participate in World Health Organization activities including attendance at the World Health Assembly Promoting patient-centred healthcare around the world Making Patient-Centred Healthcare a reality

20. Promoting patient-centred healthcare around the world African Regional Workshop 1. Identifying critical issues for African Patient groups 2. Working together across boundaries 3. Building cross-sector alliances I plan to mount a systematic patient/citizen advocacy campaign on the participation and involvement of patients in the processes towards developing National Health Policies. (Workshop delegate)

21. Promoting patient-centred healthcare around the world African Regional Workshop Next Steps – Meeting Outcomes Use of the principles of patient-centred healthcare to guide peoples work in a more significant way Workshops with colleagues and others to share learning Establishment of new local, national or pan-African networks of patient organizations Collaborative working with new partners

22. Promoting patient-centred healthcare around the world Any questions on IAPO and Patient-Centred Healthcare? Hussain Jafri, Chair, IAPO Jo Groves, CEO, IAPO Regina Namata-Kamoga, Board Member, IAPO IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

23. Promoting patient-centred healthcare around the world Lunch Please be back here by 14.10 Thank you IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

24. Promoting patient-centred healthcare around the world Session 2 How are decisions made on what healthcare services and treatments are available? IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

25. Promoting patient-centred healthcare around the world Day One Session 2 – Tuesday afternoon How are decisions made on what healthcare services and treatments are available? 14.15-17.30Presentations, case studies and group work on different approaches to healthcare decision-making 17.30End of day one

26. Promoting patient-centred healthcare around the world Regional approaches to healthcare decision-making Durhane Wong-Rieger, IAPO Board Member Eva-Maria Ruiz de Castilla, Esperantra] IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

27. Promoting patient-centred healthcare around the world Regional approaches to healthcare decision-making Q&A IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

28. Promoting patient-centred healthcare around the world Break Please be back here by 15.30 Thank you

29. Promoting patient-centred healthcare around the world What is the reality for patients organizations working within these approaches to healthcare decision-making? IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

30. Promoting patient-centred healthcare around the world Fibroamerica Case Study Question and Answer IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

31. Promoting patient-centred healthcare around the world Group work – Case Study 1: Identifying how we can each learn from the work of Fibroamerica IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

32. Promoting patient-centred healthcare around the world Questions for group work: What most resonated with me from Blancas presentation? Could I use any of the approaches adopted by Fibroamerica? What one change could I make to my work based on this presentation? IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

33. Promoting patient-centred healthcare around the world What have we learnt? Whats next? IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

34. Promoting patient-centred healthcare around the world A Question for Discussion: What is the single biggest challenge for your organization in supporting better access to healthcare for patients? IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

35. Promoting patient-centred healthcare around the world Close of Day 1 IAPO Patients Workshop Thank you IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

36. Promoting patient-centred healthcare around the world IAPO, AFA, Concebir, Esperantra and fipan are pleased to welcome you to a workshop on: Patient-Centred Healthcare: 13 - 14 October 2009 Buenos Aires, Argentina

37. Promoting patient-centred healthcare around the world Day Two Session 3 – Wednesday morning Principles of, and approaches to, patient engagement and advocacy 09.30-13.00Presentations, case studies and group work on collaborative approaches to advocacy and partnerships 13.00Lunch Multi-stakeholder Seminar and Reception Wednesday afternoon 15.00-18.00Seminar on Improving Access to Healthcare through Patient Involvement 18.30Reception

38. Promoting patient-centred healthcare around the world Introduction to effective advocacy for patients organizations Why Advocacy? Virginia Ladd President and Executive Director, American Autoimmune and Related Disorders Association & IAPO Board Member IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

39. Empowering Patients Through Advocacy

40. The role of advocacy is becoming increasingly important to the welfare of patients because of the dramatic changes in the financing and delivery of health care and how research funding is allocated.

41. Organizations and agencies representing patients must step up to this challenge by: Making advocacy a priority program area Taking a strong advocacy stance Collaboration in this area is essential

42. More than ever, patients need independent advocates to help protect their interests.

43. The four principal targets of patient advocacy organizations are:

44. Individual patient or case advocacy

45. Health care payers

46. Health care providers

47. Health Policy Makers

48. Today, in the face of new economic relationships in health care, physicians and other providers are confronted with potential conflict of interest with regard to patients.

49. Of great importance today is the role that voluntary patient organizations play.

50. The principles of advocacy and collaboration that organizations use can be applied locally, nationally and internationally within different systems and different sized organizations.

51. We must empower patients to become their own BEST ADVOCATE.

52. Patients need to be empowered to be their own best advocate in order to face: financial pressures differences in medical opinions Healthcare rationing Patient safety

53. Patients need to be empowered to be their own best advocate in order to face: advancements in biotechnology explosion of information via the Internet having a voice in the national research agenda

54. Patient groups are in a position to play this role.

55. Patient organizations increase their effectiveness by working in coalitions: Voluntary health organizations and non-governmental coalitions political or policy coalitions

56. The critical factor to involvement in coalitions is for organizations to realize that each group has a larger societal or corporate responsibility that extends beyond their own mission.

57. Groups that represent patients cannot do it alone.

58. Successful Areas of Collaboration NIH Autoimmune Disease Coordinating Committee. National Autoimmune Research Plan. National Health Council –Healthcare Reform Campaign.

59. Current Advocacy Issues Increasing NIH research funding Full funding for the NIH Autoimmune Diseases Research Plan Medicare Prescription Drug Coverage Stem Cell Research Therapeutic cloning and legislation Patients rights

60. A Case for Collaboration AARDA views collaboration as a resource.

61. Strategic Planning Summit Committee –AARDA leadership volunteers and senior staff –Corporate representatives –Researchers –Professional organizations –Other patient groups Committee purpose is to identify collaborative opportunities.

62. Collaborative effort must fit into AARDAs overall strategic plan.

63. Organizations Other Autoimmune Groups National health Council Society for Womens Health

64. Clinical Immunology Society First international scientific meeting on autoimmunity Federation of Clinical Immunology Societies Scientific and lay meetings American College of Rheumatology Scientific workshop Organizations (continued)

65. Institutions National Institutes of Health –Co-sponsored eight scientific meetings Johns Hopkins University –Sponsored nine Autoimmune Days that brought together all different disciplines that might be involved in autoimmune disease –AARDA was the initial funder of the Autoimmune Research Center at Johns Hopkins.

66. Collaborative Projects Scientific Meetings Public Forums Research Grants Advocacy –Policy Issues (Fundraising????)

67. National Coalition of Autoimmune Patient Groups Mission: To consolidate the voice of autoimmune disease patients and to promote increased education, awareness, and research into all aspects of autoimmune diseases through a collaborative approach.

68. –AARDA provides all inquirers with our information on their disease and refers them to appropriate groups –No local chapters –Encourages all magazine stories to include a side bar listing other groups –Refers donors interested in funding single disease research to appropriate groups Building Trust

69. Collaborative Advocacy Members agreed to refer to their singular diseases as autoimmune in order to reach the public with a more unified voice. Successful in getting report language that called for the formation of an NIH Autoimmune Diseases Coordinating Committee which involves all of the NIH institutes, the FDA, and the CDC. Initial funding of 150 million over five years for the committee.

70. Collaborative Advocacy Successfully advocated for Congress to request a report on what was the exact status of autoimmune research at the NIH. Successfully advocated for language in the Children's Health Act which required the NIH committee to produce a national research plan. The plan is now completed and was recently submitted to Congress.

71. Family Foundation approached AARDA to fund one of our projects. Several meetings, written agreement AARDA invested resources and spokesperson in mutual fund raising event. Following event, family decides to fund another project AARDA pulls out of the relationship. When Collaboration Fails

72. What we learned from the experience –Make sure all involved understand how a non -profit works. –Make sure the involved parties have the same ethics. –Dont let the money drive the decisions.

73. Thank you

74. Promoting patient-centred healthcare around the world Mapping the issues: IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina What is the single biggest challenge for your organization in supporting better access to healthcare for patients?

75. Promoting patient-centred healthcare around the world Mapping the issues: Exploring the underlying issues in accessing healthcare in more detail IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

76. Promoting patient-centred healthcare around the world Break Please be back here by 11.25 Thank you IAPO Workshop 13-14 October 2008 Buenos Aires, Argentina

77. Promoting patient-centred healthcare around the world KP Tsang Board Member, IAPO Sharing the burden, maximising impact: exploring the benefits of working in partnerships and networks to affect change IAPOs approach to partnerships and networks

78. IAPOs approach to partnerships Promoting patient-centred healthcare around the world Cross-sector alliances are crucial to improving healthcare for patients. It is only through effective engagement by all stakeholders with patient groups that our work and the experiences of patients and patients organizations can be understood and acted upon. The aim is to ensure the patients voice is heard where healthcare decisions are made and to maximize the patients influence at all levels of healthcare. No patient-centred healthcare without co-operation

79. Stakeholders and partnerships Promoting patient-centred healthcare around the world Who are the stakeholders that we need to work with to develop and implement healthcare policies that address patients needs? - Patients organizations - Governments/policy-makers - Doctors, nurses, pharmacists and other healthcare professionals - Healthcare industry and business corporations - Other voluntary agencies and foundations - World Health Organization (WHO)

80. Where does IAPO partner to influence policy? – Official Relations Status with WHO (since 2007) – Participation at the WHO World Health Assembly – Partnerships with international health professions association (World Medical Association, International Council of Nurses and International Pharmaceutical Federation (FIP)) – Working relationships with international bodies such as: the International Medical Products Anti-counterfeiting Taskforce (since 2006) FIPs Working Group on Patients as Partners (since 2009) Combining international, regional and national level advocacy Patients for Patient Safety (strand of the WHO Patient Safety Programme) Ensuring and enabling patient involvement in strands of the Alliance at a global level Ensuring and enabling patient involvement at a regional and national level Promoting patient-centred healthcare around the world IAPO Partnerships …meaningful and supported engagement in all levels (of healthcare policy) and at all points of decision-making… (from IAPO Declaration)

81. Case study on partnerships to work towards patient-centred healthcare in Hong Kong Promoting patient-centred healthcare around the world The Alliance for Patients Mutual Help Organizations (APMHO) which was founded in 1993 has 40 patients organizations crossing a variety of diseases. It has been working to promote Patient-Centered Healthcare since attending the Global Patients Congress in 2006. It advocates to the government and major public healthcare provider – Hospital Authority to accept patients delegates to participate at various levels of the healthcare system. As a result, patient delegates are sitting in advisory committees of the government, Board of the Hospital Authority, public Complain Committee of HA, Steering Committee of a number of hospitals, etc. Outcomes: Patients advice has been taken in decision making on a stop smoking policy, provision of vaccination to children, regulations on pharmaceutical products, etc.

82. Promoting patient-centred healthcare around the world María Isabel Rolando President Concebir Sharing the burden, maximising impact: exploring the benefits of working in partnerships and networks to affect change A Case Study from Concebir

83. Promoting patient-centred healthcare around the world Sharing the burden, maximising impact: exploring the benefits of working in partnerships and networks to effect change Q&A and Discussion

84. Promoting patient-centred healthcare around the world Group Work – Part II Developing Advocacy Approaches to Improve Access IAPO Workshop 13-14 October 2008 Buenos Aires, Argentina

85. Promoting patient-centred healthcare around the world Introduction to the Multi-Stakeholder Seminar Jeremiah Mwangi, IAPO Blanca Mesistrano, Fibroamerica IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina

86. Promoting patient-centred healthcare around the world Seminar Agenda 15.30Patient-Centred Healthcare – Improving Access to Healthcare through Patient Involvement Introduction to IAPO and Regional Supporting Organizations Introduction to Patient-Centred Healthcare 16.20Break 16.50Panel Discussion: How does patient involvement improve access to healthcare in Latin America? Chair: Durhane Wong-Rieger, Governing Board Member, International Alliance of Patients Organizations 18.00Seminar close 18.30Reception

87. Promoting patient-centred healthcare around the world Panel Discussion: How does patient involvement improve access to healthcare in Latin America? Chair: Durhane Wong-Rieger, IAPO Panellists:Luis Adrian Quiroz Castillo, Derechohabientes Viviendo con VIH del IMSS, Mexico Blanca Mesistrano, Asociación Fibro America, Argentina Lic Elena Perich, Federacion Argentina de Enfermeria Monica Carles, Representative of Ministry of Health

88. Promoting patient-centred healthcare around the world Invited Stakeholders Representatives from the Ministry of Health Representatives from WHO Healthcare Professionals Nurses association Doctors association Pharmacists association Dentists association Regulators Academics Civil Society

89. Promoting patient-centred healthcare around the world IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina What would you like to achieve/ask this afternoon?

90. Promoting patient-centred healthcare around the world IAPO Patient Workshop Working Effectively with the WHO One day interactive seminar to coincide with the World Health Organization – 62 nd World Health Assembly 30 Patient Advocates from 17 Countries Aim: To provide attending patient advocates with a better understanding of the role of the WHO in global health policy Some of the key topics covered in the workshop included: patient advocacy and the WHO, counterfeit medicines & patient safety, chronic conditions and; health promotion.

91. Promoting patient-centred healthcare around the world IAPO Patient Workshop Working Effectively with the WHO Outcomes: Coordinated eight meetings with IAPO members and their country delegates. IAPO intends to hold this workshop annually as a key part of the IAPO strategic plan The patient voice should always be heard as clearly as possible. – Ted Karpf, WHO Partnership Office

92. Promoting patient-centred healthcare around the world IAPO Workshop 13-14 October 2009 Buenos Aires, Argentina IAPO Patient Workshop Working Effectively with the WHO Participant testimonials

93. Promoting patient-centred healthcare around the world Thank you!