Patients urged to set the agenda on non-communicable diseases

May 23, GNA - A group of 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. The call was made at a pre conference meeting to the World Health Organization's (WHO) World Health Assembly in Geneva, Switzerland, 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). About 50 participants including member states of the organisation, health professionals and WHO representatives are attending the meeting. A statement forwarded to the Ghana News Agency (GNA) by Sharecare Ghana, an association of people with autoimmune and neurological conditions, said speakers from Africa, Latin America and Europe highlighted, with practical examples, how patient advocates were contributing knowledge, experience and resources to support efforts to tackle chronic diseases.

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. The statement said interventions like those and many others were driven from within the communities they served, reflecting their needs and preferences and ensuring that they were relevant to the context in which they were being implemented. "For these to be most effective there need 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." The 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 for a greater role for patients' organizations in every stage of NCD policy and program designed along with implementation at all levels. The meeting also stressed the importance of undertaking the work in order to address NCDs to strengthen the health system's ability to respond to all chronic conditions. Jose .M. Martin-Moreno, Director, Programme Management of WHO Regional Office for Europe said, 91Policy-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," he said. 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 and governments by including the patient voice more systematically across the organization, Mr Johnstone said.