IAPO consultation reveals that patients worldwide seek greater role in health policy

London, United Kingdom, 7 July 2004 -- The International Alliance of Patients' Organizations (IAPO) today announced that in a recent consultation with 100 of its member patients’ organizations around the world, an overwhelming 87% of respondents indicated the importance of the patient’s role in health policy.

This was closely followed by three other key issues: the relations between patients and healthcare professionals (83%); the patient’s role in healthcare systems and delivery (82%) and access to medication and treatment (81%). IAPO, as the global group representing patients, conducted the consultation to investigate what issues patients’ organizations currently consider to be important to them and to the patients they represent. The respondents were from disease-specific and cross-disease patients’ organizations in Europe, North America, the Western Pacific and Latin America. The results strongly support the involvement of patients in their own healthcare and show that in addition to the patient’s role in decision-making during their own treatment, patients consider they have a role in the development of health policies and the design and implementation of healthcare systems and delivery all over the world.

Ms Myrl Weinberg, Vice Chair of IAPO, stated “IAPO supports the development of a stronger patients’ voice in health-related policy-making. Alongside other key stakeholders, including health professionals and representatives of pharmaceutical and medical technology companies, more attention should be given to the views of the long-term users and beneficiaries of healthcare – the patients themselves – and to the organizations that can effectively represent them – the patients’ organizations.”

This position was supported by Ms Virginia Ladd, Board Member of IAPO, who commented "As a patient with a long-term chronic illness, I have come to realize the importance of being involved and trying to influence healthcare policy that can directly affect my well being. I believe that patient-centred healthcare is the wave of the future and will not only benefit patients but also help contain healthcare cost. Patients’ organizations can be effective in helping patients become their own best advocates."

Raising the patients’ profile
IAPO’s focus on encouraging cross-sector alliances and promoting the inclusion of the patients’ voice at all levels of health policy and health systems design and delivery will be strengthened by a landmark reception in Geneva, Switzerland, on Monday 12 July 2004. IAPO will meet for the first time with the global associations representing doctors, nurses and pharmacists; the pharmaceutical, medical technology and self-medication industries; the World Health Organization and the Global Forum for Health Research. Professor Ilona Kickbusch, Senior Advisor to the Pan American Health Organization (PAHO) and Professor of Global Health at Yale University will be presenting the keynote address on ‘Health and Citizenship: the Characteristics of the 21st Century Health’.

The Chair of IAPO, Mr Albert van der Zeijden, a patient advocate for over 20 years commented, “2004 is a key year for IAPO in the building of alliances with other stakeholders in health. Like them it is vital that patients are represented by a global association that can stress the necessity that other stakeholders involve patients and consider the patients’ view in their work. To this end, we are happy to be forging links and collaborating with associations of health professionals, policy-makers, industry and researchers. Such collaboration is essential if patient-centred healthcare is to be achieved.”