International Alliance of Patients' Organizations (IAPO)

Welcome to our June news update from the International Alliance of Patients' Organizations (IAPO).

Calling all patients' organizations around the world
Having successfully established IAPO as a formal membership organization with membership fees and benefits, it is now important to expand our membership further. This will ensure IAPO is representative of many more patients in different disease and geographical areas, and that more groups can attend the Global Patients Congress in London on 26-27 February 2005 to learn and exchange with one another.

Following requests and a meeting with one of our members, the World Headache Alliance, based in Canada, we will be working on bringing together more international disease-specific organizations within the IAPO membership, so they can more easily learn from and support one another. Non-member international groups, including the Multiple Sclerosis International Federation, are very supportive of this idea and plan to join IAPO in the near future. Other current international members include: Arthritis and Rheumatism International, the Global Alliance of Mental Illness Advocacy Networks, Hepatitis Foundation International, the International Osteoporosis Foundation, and the World Federation of Hemophilia.

All patients' organizations working at the national, regional or international levels are eligible to join IAPO - find out more about IAPO's membership and download an Application Form by clicking here, or email info@patientsorganizations.org if you have any questions.

Policy Framework presented at a Health Management Conference
The European Health Managment Association (EHMA) aims to improve health through good management. This year their annual conference (Berlin, 23-25 June 2004) focussed on 'Citizen Empowerment: Opportunities and Threats for Health Management', bringing together health managers, policy-makers and academics to discuss research and strategies to advance patient-centred healthcare in European countries.

Jo Harkness was invited to present IAPO's approach to policy formulation and Policy Framework in a panel session on 'Patient Involvement in Policy Formulation', along with examples of successful patient involvement in policy formulation from Stephen McMahon, Irish Patients Association (IAPO member), and the results of a five-country survey on the wants and needs of the European healthcare consumer from Margarietha Wats, RVZ Netherlands. Delegates were very interested to hear about IAPO's approach to policy formulation, and particularly supportive of our emphasis on representing our members using consultations, which was most encouraging. The full text of Jo's presentation is available on our website - please click here. For more information about EHMA, please click here.

Medical Technology Group Parliamentary launch of paper 'Economic Benefits of Medical Technology'
The Medical Technology Group in the UK have released a paper which outlines the benefits to patients, the UK's National Health System and society as a whole of the use of medical devices such as pacemakers, cataract lenses and hip replacements. The parliamentary launch on 22 June 2004, attended by IAPO's Policy & External Affairs Director, Jo Harkness, was hosted by Dr Ian Gibson MP and brought together representatives from the medical devices industry and patients' organizations. The paper can be downloaded as a PDF file from the IAPO website by clicking here.

IAPO member, the Genetic Interest Group, holds its first fundraising event in London
We would also like to announce an upcoming fundraising event - the first ever organized by the Genetic Interest Group (GIG) - one of our members based in the UK. GIG is holding a Fun Money Casino Night on Friday 9th July 2004 from 7pm-11pm at the King Alfred School, North End Road, London NW11, featuring roulette, blackjack, music, prizes, drinks and food.

The aim of the event is to raise money for GIG - a national alliance of organizations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders or diseases. Its primary goal is to promote awareness and understanding of genetic disorders so that high quality services for people affected by genetic conditions are developed and made available to all who need them. For more information about the Casino night, please contact Lucy Ullman or Melissa Winter by emailing casino@gig.org.uk. To find out more about GIG and their membership, activities and news, please click here.

Member Consultation - Policy Priorities and Global Patients Congress, 2005
IAPO has had a very encouraging response to our first online member consultation, conducted in May. Almost half of the IAPO members gave us their opinions on important policy issues and training activities, and also indicated that our consultation tool was quick and easy to use.

Perhaps the most striking results were which policy issues are very relevant to our member organizations with a gigantic 87% chosing the patient's role in healthcare policy. Not far behind were the patient's role in healthcare systems and delivery, the relations between patients and healthcare professionals, access to treatment and medication, defining patient-centred healthcare and patient's rights and responsibilities. This contrasted with other policy issues receiving less than 50%. A Report has now been produced which displays the full results using figures - click here to read more on the IAPO website and to download the Report in PDF format.

IAPO Chair presents at self-medication conference in Madrid
Our Chair, Albert van der Zeijden, was invited to present his views on a new study produced by the Association of the European Self-Medication Industry (AESGP), at their recent AGM in Madrid, on 3 June 2004. The study was entitled 'The economic and public health value of self-medication - a new study - Balancing the Benefits', and aims to demonstrate that self-medication makes a significant contribution to relieving the financial burden of the European healthcare system. Mr van der Zeijden concluded that the study is timely and that its direction is very much in line with IAPO's perception of the future distribution system of medicines. However, he asserted that the ability of the study to provoke debate might be stronger if the study was more explicit in terms of the way towards and the instruments to reach the promoted system. The full text of Mr van der Zeijden's presentation is available to view on our website - please click here. For more information on AESGP, please click here.

Geneva Reception
Finally, all at IAPO are looking forward to our upcoming Governing Board Meeting in Geneva in July, and our Reception with a variety of stakeholders on Monday 12 July at 18.30, including representatives from WHO, the World Medical Association, the International Council of Nurses, the International Pharmaceutical Federation, the International Federation of Medical Students' Associations, the International Hospital Federation, the International Osteoporosis Foundation, the World Dental Federation, the World Heart Federation, the International Union Against Cancer and the Council on Health Research for Development, amongst others.