The Global Asthma Report 2018

The role of patient advocacy

Asthma prevention and control efforts are of worldwide importance due to the high global burden of asthma. The 2011 United Nations High-Level Meeting on non-communicable diseases (NCDs) shifted global health priorities to include asthma along with other NCDs. Thus, asthma advocacy programmes that involve patients, caregivers, and nongovernmental organizations (NGOs) have increasing opportunities for global impact.

What is advocacy?

Advocacy is a systematic approach to promoting asthma-related issues and motivating others to take action. Asthma patient advocacy is a framework to ensure meaningful involvement of the community in decisions affecting patient lives. It is also deeply rooted in the concept of empowerment whereby asthma patients are encouraged to understand their own needs and actively participate in their asthma management, thus empowering them to better shape the direction and events of their lives. Patient advocacy can improve access to treatment, raise awareness of the value of prevention and management of asthma, and ensure the integration of patient viewpoints into planning and policy decisions.

Asthma advocacy around the world

The history and impact of asthma advocacy varies globally. In high-income countries, asthma advocacy organisations have existed for over sixty years, raising asthma awareness while increasing levels of understanding and patient engagement. In North America, asthma advocacy groups have significant influence over policymakers, researchers, and healthcare providers. Advocacy is critical to the healthcare paradigm shift from illness-centred to patient-centred care, where patients and families actively participate in their care and in the creation of services and policies. Throughout Europe and Australasia, asthma advocacy organisations have advanced clinical and translational research while providing millions of patients with an opportunity to connect, grow and learn. In low- and middle-income countries (LMICs), patient advocacy efforts are emerging, particularly in Africa and Latin America. There are significant challenges to asthma management in LMICs and patient advocacy is an important component of providing local context and improving asthma outcomes.

Asthma advocacy at all levels

Asthma policy advocates work in parallel with policymakers and patients to affect change. Forums, such as the Global Allergy and Asthma Patient Platform (www.ga2p2. org), connect asthma stakeholders, including patients, caregivers, healthcare professionals, NGOs, media, industry, government leaders, and researchers. By working collaboratively these groups raise awareness of key patient challenges, improve access to care and provide infrastructure for asthma care; provide laboratory, training, and other support facilities; ensure reliable supplies of asthma medicines and devices; can provide professional training or trained staff; and establish mechanisms to distribute resources and expertise to people who need them.

Tonya Winders

Next: Asthma as an NCD Priority >

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