Promoting patient-centred healthcare around the world Patient-Centred Healthcare: A Global Concern Jo Harkness, Policy & External Affairs Director, IAPO National Health Council Conference 10 February 2006 Fort Myers, USA

Promoting patient-centred healthcare around the world Content of Presentation A short introduction to the International Alliance of Patients’ Organizations (IAPO) An introduction to patient-centred healthcare Globalization and healthcare The role of IAPO: capacity building, policy and cross sector alliances WHO World Alliance for Patient Safety The future: IAPO’s strategic and annual plans

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

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 IAPO’s role is built around the understanding that patients voices are amplified and heard effectively when patients’ organizations are linked and connect resources to share best practices and practical strategies. This role falls into three main areas following our mission to help build patient-centred healthcare in worldwide by:

Promoting patient-centred healthcare around the world Patient-Centred Healthcare: Some Definitions ‘Patient-centred health care is quality health care achieved through partnership between informed and respected patients and their families, and a coordinated health care team’, National Health Council (USA), 2004 ‘Health care that is congruent and responsive to patients’ wants, needs and preferences’, Laine & Davidoff, 1996 ‘A collaborative effort consisting of patients, patients’ families, friends, doctors and other health professionals…achieved through a comprehensive system of patient education where patients and the health professionals collaborate as a team, share knowledge and work towards the common goals of optimum healing and recovery’, Grin, 1994 The essence of patient-centred healthcare is when the healthcare system is designed and delivered so that it can answer the needs of patients (

Promoting patient-centred healthcare around the world 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 Access and support Information that is accurate, relevant and comprehensive

Public health issues are global The health industry is increasingly multinational Healthcare policies are debated and developed internationally Progress in science, medicine and technology is international Other important stakeholders in healthcare are organized and influential internationally Promoting patient-centred healthcare around the world Globalization and Healthcare

Global Issues for Patients’ Organizations: IAPO’s Policy Priorities The massive issues of access to treatment and care Lack of meaningful patient involvement in health policy decision- making The need for an international concerted effort to address patient safety The need for quality health information and communication Promoting patient-centred healthcare around the world

IAPO provides a range of capacity building support to its members. This currently includes: 2nd Global Patients Congress, ‘Together we can…’, February 2006, Barcelona ( Online training materials and other capacity building resources (The Patients Exchange and ListServ) Monthly newsletter Briefing papers on emerging issues Increasing visibility of patients’ organizations through website and newsletters Promoting patient-centred healthcare around the world Capacity Building

IAPO plays an educational role on emerging technologies that are relevant to patients’ organizations around the world Aims: To equip patient advocates with an understanding of the science and technology relevant to emerging issues To empower and enable patient advocates around the world to be well- informed and effective advocates First Briefing Paper (on Plant-Made Pharmaceuticals) published January 2005 Two papers in development (due mid 2006): Biosimilar Medicines Paediatric Medicines and Clinical Trials Promoting patient-centred healthcare around the world IAPO Briefing Papers

IAPO’s policy priorities are cross border and cross disease issues Policy activities include: proactive policy development (policy statements etc) reactive policy development (external consultations) Participation on multi-stakeholder coalitions, working groups presenting at conferences and many more! Policy development based on consultation with members (see IAPO’s Policy Framework Promoting patient-centred healthcare around the world Policy and Advocacy

Current and recent policy activities: IAPO’s Declaration on Patient-Centred Healthcare (launch date Feb 2006) WHO Publication ‘Preparing a healthcare workforce for the 21 st century: The challenge of chronic conditions’ (launched at IAPO Congress 2005) The patient’s role in healthcare policy, systems and delivery (Policy Statement and Guidelines on Patient Involvement (2005)) Patient Safety: Involvement with WHO World Alliance for Patient Safety Promoting patient-centred healthcare around the world Policy and Advocacy

Launched October 2004 Aim: to coordinate and accelerate international improvements in patient safety Patients for Patient Safety One of six action areas of the World Alliance Involving patients and patients’ organizations in work of the Alliance IAPO involvement – active member of Steering Group, location of project manager in IAPO office PFPS activities and achievements: PFPS Workshop (November 2005); development of a global network; plans for 2006; meeting at IAPO Global Patients Congress and focus on patient safety Promoting patient-centred healthcare around the world WHO World Alliance for Patient Safety

Cross-sector alliances are crucial to improving healthcare for patients. IAPO works to build relationships with key international stakeholders.  No patient-centred care without cooperation Improved communication needs well-informed patients, health care professionals and other health care partners. IAPO works with the World Health Organization and has official partnerships with the WMA, ICN and FIP. Promoting patient-centred healthcare around the world Cross-Sector Alliances

Why Go Global?: A View from Alzheimer’s Pakistan Promoting patient-centred healthcare around the world Mr Hussain Jafri IAPO Board Member and Secretary General, Alzheimer’s Pakistan National status of healthcare The relevance of patient-centred healthcare principles The value of working in a global context IAPO: organizational benefits and member contributions

IAPO’s overall strategic goal for : To raise the profile of IAPO so that we are recognised as The Independent Voice in Global Patient-Centred Healthcare. This goal is essential in order to fulfil IAPO’s vision that patients are at the Centre of healthcare. It is only through effective engagement by all stakeholders with IAPO that our work and the experiences of our members can be understood and acted upon. Promoting patient-centred healthcare around the world Strategic Plans

1. Participation: To increase global participation in patient- centred healthcare 2. Change: To inform and influence positive change for patients at a global level 3. Communication: To ensure effective communication of patients’ needs at a global level 4. Sustainability: To increase the long-term sustainability of IAPO and its members Promoting patient-centred healthcare around the world Strategic Aims

Global Patients Congress 2006, ‘Together we can…’: Develop membership base and member benefits including capacity building activities IAPO’s Declaration on Patient-Centred Healthcare Policy – education, research, development and communication on key issues Collaboration – WHO World Alliance for Patient Safety, ICN Advisory Board on Counterfeit Medicines amongst others Promoting patient-centred healthcare around the world Some Key Activities in 2006

Promoting patient-centred healthcare around the world Conclusion IAPO presents a strong voice for patients around the world with an extraordinary potential to effect change. The best way to build our capacity and to make the patient voice heard is to work together to exchange our diverse experiences, resources and expertise, to create a global support network with a strong patient voice.

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