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.'


Source: IAPO