Patients must set the agenda on non-communicable diseases

The International Alliance of Patient Organizations (IAPO) yesterday held a side meeting at the World Health Assembly in Geneva in regards to the role of patients in preventing and managing non-communicable diseases.  The press release from this event is attached below.  More updates from the World Health Assembly can be followed on twitter via #worldhealthassembly, #NCDs or #globalhealth -- or for updates of interest follow @whonews, @globalhealth, @whadvocacy or @NCDAlliance.

Patients must set the agenda on non-communicable diseases

Geneva, Switzerland, 17 May 2011 – Patient advocates have called for a stronger role in setting the agenda in the design and delivery of strategies to prevent and manage non-communicable diseases (NCDs), and chronic diseases more broadly. This call was made at a Side Meeting to the World Health Organization (WHO) World Health Assembly in Geneva, Switzerland. The meeting was hosted by the International Alliance of Patients’ Organizations (IAPO) and two of its member patient groups; Alzheimer’s Disease International (ADI) and the Multiple Sclerosis International Federation (MSIF) and attended by over 50 participants including member state representatives, health professionals and WHO representatives.

Speakers from Africa, Latin America and Europe highlighted, with practical examples, how patient advocates are contributing knowledge, experience and resources to support efforts to tackle chronic disease. Across the world in high, middle and low income countries, patient groups routinely provide health information and training to patients and health professionals. These have been shown to support prevention strategies and effective disease management to ensure that patients’ needs are met. Interventions like these and many others are driven from within the communities they serve, reflecting their needs and preferences and ensuring that they are relevant to the context in which they are being implemented. For these to be most effective there needs to be a greater focus on, and commitment to, policy-making that involves the users of care. As the United Nations High-level Meeting on Non-communicable Diseases approaches, it is vital that discussions and outcomes reflect the fundamental changes that are needed to strengthen and adapt healthcare systems to involve and address the health and quality of life needs of patients with chronic disease.

Patient advocates stressed a need for a greater focus on disease management, including reducing severity and promoting quality of life, in addition to prevention. They called a greater role for patients’ organizations in every stage of NCD policy and program design along with implementation at all levels. It was also stressed that it was important that the work undertaken to address NCDs strengthens health systems ability to respond to all chronic conditions.

A participant, Jose M. Martin-Moreno, Director, Programme Management of WHO Regional Office for Europe said ‘Policy-making in health matters should involve the patient voice for the benefit of all. Within health systems we should not compete but ensure that we prevent the preventable, diagnose early, take care of those with a disease and give dignity to those at the end of life. Patients have an important role to play in achieving these goals.’

These points were reinforced by Robert Johnstone, IAPO Governing Board Member and Board Member, National Voices (UK) who stated that, ‘The patient voice must be at the centre of chronic disease prevention and management; and active in all stages of decision-making. The WHO has an important role to play in setting an example to member states’ governments by including the patient voice more systematically across the organization.’


About IAPO: IAPO is the only global alliance representing patients of all nationalities across all disease areas and promoting patient-centred healthcare worldwide. Our members are patients’ organizations working at the local, national, regional and international levels to represent and support patients, their families and carers. IAPO has over 200 members which span over 50 countries and 50 disease areas and through its membership represents an estimated 365 million patients worldwide.

About ADI: Alzheimer’s Disease International (ADI) is the international federation of 77 Alzheimer associations around the world. It was founded in 1984 as a network for member associations to share and exchange information, resources and skills. Each of ADI’s 77 members is a non-profit association focused on supporting people with dementia and their families.

About MSIF: The Multiple Sclerosis International Federation (MSIF) was established in 1967 as an international body linking the activities of national MS societies around the world. MSIF’s mission is to lead the global MS movement to improve the quality of life of people affected by MS and to support better understanding and treatment of MS by facilitating international cooperation between MS societies, the international research community and other stakeholders.