Published Online: October 24, 2016
Low-income, African-American and Latino communities in the United States suffer disproportionately from asthma, in both prevalence and poor outcomes, and asthma research has not kept up with the need to improve their care. The Patient Centered Outcomes Research Institute took a major step toward filling the research gaps in 2014 when it funded 8 teams across the U.S. to develop and test innovative asthma care solutions specifically for African-American and Latino patients across the lifespan. Each team adopted an atypical approach to healthcare research: they partnered with a broad array of stakeholders—patients, community based organizations, payers, government agencies and others—to design interventions, develop engagement and recruitment plans, and address challenges as they arose. In this month’s issue of The Journal of Allergy and Clinical Immunology (JACI), Kramer and colleagues share important collective lessons from these studies that have implications not only for engaging low-income African-Americans and Latinos in asthma research, but also for engaging them in care.
The authors examined the recruitment procedures used by each team, the challenges they faced, and the solutions they and their stakeholder partners developed to enhance or improve recruitment. They categorized the challenges by their sources: the patients and or their caregivers, the healthcare institutions supporting the research or delivering the intervention, the research teams’ limitations, and limitations of study design.
The article details the challenges and solutions arising under each category, and some stand out as particularly relevant to the delivery of asthma care. For example, patients or caregivers were often difficult to engage because they believed their asthma was episodic or even non-existent. Academic medical institutions often had regulations that limited the flexibility of teams to adapt their approaches to engagement in nimble ways despite the low risk of the interventions. Likewise, research teams frequently struggled to keep their staff trained to adapt to the myriad challenges posed by patients as they arose. Finally, the design of asthma interventions occasionally dissuaded patients from participating because they perceived the time commitments as onerous or inconvenient. Kramer and colleagues document a host of strategies developed by the asthma research teams to address these and other challenges. Key among them was communication with patients and caregivers about asthma that moved beyond disease label by focusing on disease experience, like shortness of breath. Adaptability was at the core of many strategies, such as veering from strict study protocols to support patients in ways they viewed as valuable.
The findings reported by Kramer et al provide compelling and useful information about recruitment for researchers, as well as lessons for healthcare providers about engaging these patients in asthma care. Ultimately, they point out, greater investment by the National Institutes of Health and other funders to support research on engaging African-American and Latinos is needed to eliminate the disparities in asthma care and outcomes they face.
The Journal of Allergy and Clinical Immunology (JACI) is an official scientific journal of the AAAAI, and is the most-cited journal in the field of allergy and clinical immunology.