The Congress was opened by Harry Cayton, Director for Patients and the Public at the Department of Health. He shared a personal message from The Rt. Hon. Dr. John Reid M.P. Secretary of State for Health, UK, "The Secretary of State has asked me to welcome you to this first Global Patients Congress and to England.  The Government in the UK is strongly committed to the involvement of patients and the public in decisions about their personal health and health care and as citizens in the planning and improvement of health services. Active patient organisations are vital partners for governments, heath professionals and health care providers in improving health and increasing choice for all. The Secretary of State hopes you have a productive and stimulating conference."

Robert Johnstone (Arthritis and Rheumatism International), Harry Cayton (UK Department of Health), and Elizabeth Wincott (Long Term Medical Conditions Alliance)

Harry Cayton introduced the ideas, “Trust me, I’m a patient!” and “Nothing about us without us”, which resonated with the delegates and were central to the themes of the Congress - patient involvement and partnerships.   Patient delegates at the Congress quickly established a strong and mutually supportive community and, equally, they were keen to develop understanding and collaborative partnerships with healthcare policy-makers, professionals, providers and companies.  The Congress brought together 28 representatives of these groups helping to build networks and foster collaborations for the future.

On the Saturday, the EU Commissioner for Health and Consumer Protection, Markos Kyprianou, headed a high-level international panel of policy-makers, patient representatives, providers and industry representatives that considered the benefits and challenges of patient involvement in healthcare policy, systems and delivery.  Following the session, Albert van der Zeijden, Chair of IAPO, expressed his appreciation of the panellists’ commitment to patient involvement and emphasized that “Patient involvement is often dependent on the goodwill of a few individuals.  I know that with support and commitment from others we can make it the rule, rather than the exception”.

Markos Kyprianou, the European Commissioner for Health and Consumer Protection, discusses patient involvement in policy-making at Saturday's panel session.

On Sunday, IAPO’s valued partners, the International Council of Nurses (ICN), the International Pharmaceutical Federation (FIP), the World Medical Association (WMA) as well as the International Federation of Medical Students Associations (IFMSA), shared their perspectives on the challenges health professionals experience and the need for collaboration to promote understanding between professionals and patients. 

Contributing to this issue, the World Health Organization (WHO) launched their new publication “Preparing a Healthcare Workforce for the 21st Century: The Challenge of Chronic Conditions”.  The report outlines five core competencies of patient-centred healthcare, partnering, quality improvement, information and communication technology and public health perspective.  Dr JoAnne Epping-Jordan, Coordinator, Health Care for Chronic Conditions, WHO, commented, “These competencies do not replicate or preclude established core competencies (evidence-based care, ethical care), nor profession-specific competencies.  Rather, they augment existing knowledge and skills to provide better outcomes for chronic conditions”.  Dr Epping-Jordan added, “It is entirely fitting to launch this publication at IAPO’s first Global Patients Congress in the presence of contributors to the publication, IAPO, the European Respiratory Society (ERS), ICN, FIP and WMA”.

Dr JoAnne Epping-Jordan (World Health Organization) and Albert van der Zeijden (Chair, International Alliance of Patients' Organizations)

The ideas and actions generated at the Congress are feeding into written guidelines to encourage meaningful patient involvement in healthcare policy, systems and delivery.  IAPO will also launch a Manifesto for Patient-Centred Healthcare later this year, communicating the principles of patient-centred healthcare reflected in the meeting and by patients’ organizations globally.

Commenting on the success of the Congress, Enrique Silver, IAPO Board Member and President of the Uruguayan Cystic Fibrosis Association commented, “This Congress has shown how much can be achieved when patients’ organizations from around the world come together.  I have experienced an amazing sense of community and shared values between patient leaders from Africa, the Americas, Asia and Europe.”

Kim Longlands (Endometriosis SHE Trust, UK) and Josephine Knox (Trimethylaminuria Foundation)

John Walsh, President and Chief Executive of the Alpha-1 Foundation in the United States added, “We worked hard together this weekend to identify the importance of the close collaboration of all stakeholders.  The Congress provided a forum for all of us to identify the most important challenges we face to improve healthcare and structure the dialog for collaboration of all stakeholders moving forward.  The open exchange and synergy generated helped each of our organizations by providing the framework to create initiatives to support our common goals.  I think it is critical that we continue to foster global communications and look forward to making additional progress at the Congress next year". 

Pat Matemilola (Network of People Living with HIV/AIDS in Nigeria), Hussain Jafri (Alzheimer's Pakistan) and Magda Bojarska, Foundation Institute for Patient's Rights and Health Education (Poland)

View the full Press Release (with Notes to Editors) in PDF format

More photos of the Congress, including the Welcome Reception, panels, Working Groups and of course, the Congress Dinner will be posted here very soon! 

As a start, here is another picture from the Congress Dinner on Saturday evening, showing the winners (Table 3) of the celebrated Congress Quiz... we're sure everyone at the Congress would like to congratulate Table 3, especially for their in-depth knowledge of human genetics...!

Kathy Kovacs Burns (Best Medicines Coalition, Canada), Karen Wolk (National Marfan Foundation, US), Linda Cann (American Diabetes Association) and Wendy Bennett (The Medtronic Foundation)