1. Promoting patient-centred healthcare around the world The Patients’ Role in Influencing Access to Health Jo Harkness, Policy & External Affairs Director, IAPO Geneva Forum: Towards Global Access to Health 30 August 2006 Geneva, Switzerland

2. 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 New survey results on patients’ perceptions to healthcare IAPO’s strategic approach The role of IAPO: capacity building, policy and cross sector alliances

3. 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

4. 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 mission areas to help build patient- centred healthcare worldwide by:

5. Promoting patient-centred healthcare around the world What is Patient-Centred Healthcare? Research in 2004 showed that there are a number of definitions of patient-centred healthcare and growing evidence of the benefits of its practice (including patient quality of life, improving physiologic measures and increasing efficiency of use of healthcare services)* The essence of patient-centred healthcare is that the healthcare is designed and delivered so that it can answer the needs of patients IAPO’s Declaration on Patient-Centred Healthcare outlines the Principles: Respect for unique needs, preferences and values Choice and empowerment Patient involvement in health policy Access and support Information that is accurate, relevant and comprehensive *See IAPO (2005) ‘What is Patient-Centred Healthcare?: A Review of Definitions and Principles’ Available online: www.patientsorganizations.org/pchreviewwww.patientsorganizations.org/pchreview

6. Promoting patient-centred healthcare around the world IAPO Study: Patients’ Organizations Members Perceptions on Healthcare The objective of this study was to provide an objective insight into patient organisation members’ perceptions on the state of healthcare, future concerns, and reactions to government healthcare policies. This perception study includes measurement and analysis of the quality of healthcare, the outlook for improvement and tries to identify the major challenges to achieving these improvements.

7. Promoting patient-centred healthcare around the world Survey Methodology The study was undertaken in April/May 2006 with 1200 members of patients’ organisations in 12 countries* Random sampling of publicly available lists of patients’ organization members, followed by random digit dialling** *The study was undertaken by Consensus Research and supported by Pfizer Inc. The 12 countries included in the study were: UK, Germany, France, Hungary, Austria, Czech Republic, Italy, Spain, Belgium, Sweden, Canada, Nigeria. **IAPO membership was not a condition for being interviewed for the survey.

8. Promoting patient-centred healthcare around the world Survey results 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

9. Promoting patient-centred healthcare around the world Patient healthcare perspectives Members of patients' organizations are more satisfied with the overall “quality” of healthcare today (62%) - than with the “delivery” of that healthcare in terms of specifics like: “access to information on new medicines and treatments (51%) “convenience/timing of obtaining the healthcare/appointments/procedures they need” (50%) “out-of-pocket costs” they have to pay for their healthcare. (45%) Satisfaction with healthcare % Top 4 Box [7, 8, 9, 10 on 0-10 Scale] Q2. On a 0-10 scale, how would you rate the [INSERT] these days if a rating of l0 means excellent and 0 means very poor?

10. 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?

11. 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?

12. Promoting patient-centred healthcare around the world Agreement with healthcare statements The healthcare position statements that patients’ organization members most agree upon include: people have the right to the most effective and most timely access to treatment possible [97%, 82%] because timing is so important in the prevention of disease, access to the most effective medicines when you need them most is an essential right [98%, 77%] a strong patient/physician relationship should be at the center of every healthcare system [96%, 71%] Agreement with healthcare statements Q10. Would you say you strongly agree, agree somewhat, disagree somewhat or strongly disagree with each of the following statements?

13. 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 IAPO’s Strategic Plan 2006-2008 Strategic Aims: IAPO’s overall strategic goal: To raise the profile of IAPO so that we are recognised as The Independent Voice in Global Patient-Centred Healthcare.

14. IAPO’s policy priorities are cross border and cross disease issues Policy development based on consultation with members* Promoting patient-centred healthcare around the world Policy and Advocacy Current and recent policy activities: IAPO’s Declaration on Patient-Centred Healthcare (launched 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 * see IAPO’s Policy Framework www.patientsorganizations.org/policyframework

15. IAPO provides a range of capacity building support to its members. A few examples: 2nd Global Patients Congress, ‘Together we can…’, 22-24 February 2006, Barcelona (www.patientsorganizations.org/congress)www.patientsorganizations.org/congress Online training materials and other capacity building resources (The Patients Exchange and ListServ) Briefing papers on emerging issues Promoting patient-centred healthcare around the world Capacity Building

16. Promoting patient-centred healthcare around the world Conclusion Access to healthcare is a massive global problem Access is integrally linked with provision of information and patient involvement in health Patients’ organization members support a patient-centred approach to healthcare as the way to a cost-effective and fair healthcare system Improving access to healthcare requires the participation of all stakeholders – a coordinated multi-stakeholder and multi-level approach, sharing knowledge and resources to be effective  No patient-centred care without cooperation

17. Contact us Please visit our website to find out more: www.patientsorganizations.org www.patientsorganizations.org If you would like to receive our free monthly email newsletter and details of other publications, please send your details to us: 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