The role of patient advocacy
The definition of advocacy found in the World Health Organization (WHO) Roll Back Malarial (RBM) Advocacy Guide (2000) is “winning the support of key constituencies in order to influence policies and spending to bring about social change.” While this definition is helpful, it is even more important to focus on the questions of “why”, “what”, “to whom” and “how”. Here we highlight answers to these questions and provide specific examples in asthma.
Why is advocacy important?
Two main reasons for engaging in advocacy exists:
- A compelling health problem or situation that needs analysis and action. Asthma directly impacts millions of people across the world. Over half of these are living with uncontrolled disease which clearly warrants analysis and action.
- The solution to this situation requires understanding and action by a variety of stakeholders. Asthma burden and impact cannot be mitigated by patients or healthcare providers alone. It is imperative all stakeholders come together to effect change.
Some examples of key changes sought include policy change, programme change, practice change, a change in investment or a change in awareness. An example of policy change is evidenced in USA by Allergy & Asthma Network which has worked to ensure every school in the country has access to emergency medicines for allergy and asthma. Federal and state laws have been adopted to ensure schools are prepared and protected to respond to emergency medical situations with stock medications and liability measures. An example of practice change and investment change is found across Europe where there is advancement of quality standards and reimbursement of biologics for the treatment of severe asthma.
What are the objectives of patient advocacy?
Defining the advocacy objective is the first step. This is an incremental and realistic step toward a larger goal or mission. It should focus on a specific and measurable action that an institution can take. For asthma, advocacy is deeply rooted in the concept of patient empowerment whereby asthma patients must own their needs and actively participate in managing their disease. Patient advocacy can raise awareness, educate on the prevention and management and work to improve access to appropriate treatments for patients.
One such advocacy objective is to curb the overuse of quick-relief/rescue medication in uncontrolled asthma and increase the use of maintenance/controller medication. Asthma Canada leveraged a public awareness campaign in Toronto to highlight the issue and garner the attention of the public and policymakers to evoke systems change.
To whom do patient advocates communicate?
The audience of advocacy efforts is highly dependent on the goal to be achieved in any given advocacy objective or project. Different types of audiences one may engage include politicians (local, city, state, national, international, etc.), donors, journalists, healthcare providers, industry, the general public and non-governmental organisations.
Politicians listen and respond to voters. Several asthma patient advocacy organisations host annual advocacy days at the local, regional, national and international levels. By equipping patients to share their story in a compelling way, advocacy organisations are empowering social change.
How do patient advocacy organisations impact asthma globally?
The history and impact of asthma advocacy still varies globally; however, progress has been made in recent years. For example, The Global Initiative for Asthma (GINA) Advocates Program, now includes patient reviewers who share equal representation and voice with health professionals in providing input to GINA about report updates and dissemination. In high-income countries, especially in North America, asthma advocacy groups have significant influence over policymakers, researchers and healthcare providers. Throughout Europe and Asia Pacific, asthma advocacy organisations continue to advance clinical and translational research. For example, Asthma UK/British Lung Foundation has partnered with Allergy & Asthma Network in the USA to harmonise data across severe asthma clinical trials. In low- and middle-income countries (LMICs) patient advocacy efforts are emerging with greater structure and resourcing. For example, in Kenya patient advocates led an effort to improve air quality by meeting with government officials and encouraging the planting of trees in urban areas near childcare centres. Advocacy is essential in these countries to ensure the local context and patient voice is not lost while improving outcomes.
Over the past twelve years, the Global Allergy & Airways Patient Platform (GAAPP) has existed to act as a global umbrella advocacy organization to better represent the collective respiratory patient voice in forums like Global Alliance Against Respiratory Diseases (GARD)/WHO, GINA, Global Initiative for Obstructive Lung Diseases (GOLD) and professional medical societies like the World Allergy Organization (WAO). By working collaboratively with these groups GAAPP raises awareness of unmet patient needs, educates on quality standards and evidence-based care pathways, and improves access to diagnostics, treatments and self-management skill development. In fact, over the past five years GAAPP has co-authored over thirty peer-reviewed articles in the medical literature to elevate the patient perspective. By working together, patients, healthcare providers, policymakers, industry and the general public can ensure the right treatment to the right patient at the right time with the fewest barriers.