PCORI's Asthma Focus: Improving Outcomes for Those Who Suffer Most
May is national Asthma Awareness month, a time to call attention to the needs of the many people living with this burdensome disease. At PCORI, we’re interested in patient-centered comparative effectiveness research (CER) that can improve asthma care broadly, but we have a particular focus on African Americans and Hispanics/Latinos with uncontrolled asthma.
This focus stems from our authorizing legislation, which directs us to pay particular attention to issues that disproportionately affect certain populations, including racial and ethnic minorities.
Asthma is more prevalent and severe among African Americans and Hispanics/Latinos than among whites. Unfortunately, African-American and Hispanic/Latino children have a lower likelihood than white children to be prescribed, or to follow, evidence-based courses of asthma treatment.
So we’re funding nearly a dozen research and related projects addressing asthma. Eight are studies aimed at improving patient and provider adherence to the National Heart, Lung and Blood Institute’s National Asthma Education and Prevention Program evidence-based care guidelines and reducing adverse outcomes due to poorly controlled asthma in African-American and Hispanic/Latino populations.
What We Fund
Addressing uncontrolled asthma in African American and Hispanic/Latino populations was the subject of our first topic-specific funding announcement, awarded in December 2013. PCORI staff recommended this topic based on a review of prioritized research lists prepared by several research institutions and stakeholder groups, with additional input from a multi-stakeholder workgroup.
Through this opportunity, our Addressing Disparities program is providing a total of $23.2 million to support eight projects focused on improving health outcomes for African Americans and Hispanics/Latinos with uncontrolled asthma. The projects are randomized trials that address patient-centered outcomes such as asthma control, quality of life, emergency department visits, and missed days of school or work. Some of these projects focus on children or adolescents; others on adults, including those older than 60.
These studies are being conducted in geographically diverse settings: the Northeast, South, Midwest, and West Coast. And because improving patient-centered outcomes for asthma requires extending treatment beyond the walls of clinics and hospitals to where people live, work, and play, they projects are also examining a variety of interventions implemented in nonclinical settings, such as schools and homes.
Collectively, these projects are comparing the effectiveness of a wide variety of strategies for improving asthma treatment. For example, a Philadelphia team is using community health workers to train patients on use of a web-based electronic health record portal that allows patients to make appointments, refill medications, and communicate directly with providers. Another project, in Washington, D.C., is using a bidirectional mobile tool to track in-home use of inhaled corticosteroid by African-American adolescents with asthma and provide real-time supplemental psychosocial support to their parents. And New York City researchers will assign high-risk African-American and Hispanic/Latino asthma patients over age 60 to either clinic- or home-based support programs to assess which models of care delivery most improve outcomes important to the patients.
PCORI’s Improving Healthcare Systems program has funded an additional project that is evaluating an electronic tool that helps children with asthma and their parents to partner with their doctors to track asthma symptoms and prevent attacks.
Laying the Foundation for Making a Difference
The success of these projects requires strong partnerships with patients, caregivers, community groups, and other healthcare stakeholders. Each demonstrates meaningful engagement with these groups in developing the study plan, identifying outcomes that matter to patients, conducting the study, and advancing efforts to disseminate the results to those who need and can use them.
For example, one project in Chicago builds on a nearly two-decades-long collaboration across more than 15 clinical, research, and community-based organizations. Another project, along the California-Mexico border, works with California Breathing, the state health department division responsible for asthma-control efforts.
In addition to primary studies, we’re interested in laying the groundwork for additional research that could improve asthma care and outcomes through our Pipeline to Proposal awards, which provide seed money to individuals and groups who have healthcare research ideas and believe in the promise of patient-centered research. We’ve made two such awards relevant to asthma, one to support a community coalition that works with clinicians and academics to improve asthma care in Washington State, and a second to a community network in New Mexico that seeks to improve the health of Hispanic children with asthma.
As all of our projects move forward, we’re already thinking about how to best prepare for efforts to disseminate their results by facilitating cross-learning opportunities among research teams. We also plan to set up learning exchanges between project teams and potential end users of the research, such as patients, caregivers, and other key stakeholders (e.g., payers, employers and healthcare purchasers, professional societies, policy makers, and training institutions). We refer to these forums as Evidence to Action Networks, which will provide opportunities for the research teams to not only communicate directly with potential end users but also gain insight into what the type of evidence or information end users need to make informed decisions.
We are excited about the potential for each of these projects to improve patient care and patient-centered outcomes, and to reduce disparities in asthma outcomes. If you are interested in updates on PCORI programs, including our asthma portfolio, sign up for periodic email alerts.