Promoting patient-centred healthcare around the world A patient perspective on the multiple policy initiatives: Lessons learnt – assessing the gaps Joanna Groves Chief Executive Officer Eucomed Med Tech Forum 14 October 2008 Brussels, Belgium

Promoting patient-centred healthcare around the world Content of Presentation An introduction to the International Alliance of Patients’ Organizations (IAPO) A patient-centred approach to patient safety The role of patients’ organizations in patient safety Examples of patient engagement in patient safety Lessons learnt – assessing the gaps

Promoting patient-centred healthcare around the world About IAPO Unique global alliance of 200 national, regional and international groups representing an estimated 365 million patients worldwide Established in 1999 Crossing borders and diseases Vision: Patient-centred healthcare around the world 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.

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 mission is to help build patient-centred healthcare in worldwide by: Advocacy Capacity Building Partnerships

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 Access and support Information that is accurate, relevant and comprehensive * Principles defined in IAPO’s Declaration on Patient-Centred Healthcare available at The essence of patient-centred healthcare is that the healthcare system is designed and delivered so that it can answer the needs of patients

Promoting patient-centred healthcare around the world A patient-centred approach to patient safety ‒ Access to safe, quality and appropriate services, treatments, preventive care and health promotion activities ‒ Empowerment of patients and patients’ organizations through education, information and support ‒ Patient engagement - ‘…meaningful and supported engagement in all levels (of healthcare policy) and at all points of decision-making…’ (from IAPO Declaration on Patient- Centred Healthcare)

Promoting patient-centred healthcare around the world What can patients and patient groups do? Advocate – Advocate to raise political will to take action and implement appropriate patient safety strategies and partner with healthcare systems to develop solutions for patient safety Educate – Educate and train patient groups to make an informed contribution to patient safety initiatives and patients be empowered to make a personal contribution to safety Raise awareness – Raise awareness of patient safety issues with the public and the media

1. Patients for Patient Safety, WHO World Alliance for Patient Safety 2. IAPO Patient Safety Toolkit ‘Addressing Global Patient Safety Issues’ Two examples: Promoting patient-centred healthcare around the world

– Innovative and appropriate model for patient engagement – Ensuring patient involvement in strands of World Alliance for Patient Safety at an international level – Providing capacity building for patient advocates Regional and National Workshops Toolkits Facilitated networking and advice Promoting patient-centred healthcare around the world 1. Patients for Patient Safety ‒ Currently over 150 patient champions from all regions of the world ‒ Patient advocates working on different issues (e.g. medical errors, hospital acquired infections etc) through different methods (e.g. representation on national committees, holding awareness raising workshops etc)

Addressing Global Patient Safety Issues 2. An Advocacy Toolkit for Patients’ Organizations i.Medical error ii.Taking medicines correctly iii.Hospital acquired infections iv.Quality and safety of medicines 1. Information on common global patient safety issues: v.Re-use of single use medical devices vi.Injection safety vii.Maternal and child health viii.Participation in clinical trials 2. Tools and advice on advocating for safer healthcare and raising awareness : i.FAQs and checklists for patients ii.Facts and figures, case studies, advocacy and communications tips iii.Template powerpoint presentations, advocacy letters and press releases

To achieve improved quality and safety we need to work in partnerships with an approach based on strong values of respect, partnership and equity – no patient-centred healthcare without cooperation of all stakeholders including patient groups Educational initiatives to inform patients and the public about patient safety should be developed with the involvement of patients and patient groups Attention should be paid to the role of communication between healthcare professionals and patients – patients sometimes see things that busy health professionals do not and should feel comfortable communicating concerns they may have The European Community should work closely with the World Health Organization to support European countries so that there is sharing of expertise and resources and to minimise duplication of efforts and resources. Promoting patient-centred healthcare around the world Lessons learnt – assessing the gaps

Thank you for your attention! Please visit our website to find out more: If you would like to receive our monthly 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: Fax: Website: Promoting patient-centred healthcare around the world