- The PCORI Strategic Plan
- Our Programs
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
- Methodology Committee
- Authorizing Law
- Evaluating Our Work
- PCORI's Advisory Panels
- Procurement Opportunities
Past Opportunities to Provide Input
- Patient-Centered Economic Outcomes Landscape (2023-2024)
- Systematic Review of Audio Care for the Management of Mental Health and Chronic Conditions (2023) -- Draft Key Questions
- Proposed New Methodology Standards for Usual Care as a Comparator (2023)
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
Around 24 million Americans have asthma, a chronic lung disease that inflames and narrows the airways. People with asthma go through periods of wheezing, chest tightness, shortness of breath, and coughing. This can lead to emergencies during which a person can’t get enough oxygen.
People with asthma can learn to manage the condition, with the help of clinicians, various medications, and home environments that are clear of materials that could spark an asthma attack. Dust mites, pet dander, and cigarette smoke are among the many possible triggers.
Asthma disproportionately affects minorities. Four million African Americans, representing 10 percent of that population, have asthma, as compared with about 7 percent of the overall US population. While Hispanics/Latinos have asthma at a rate similar to the overall US average, the asthma-related death rate for children in that group is twice as high as among white children. For African Americans, the asthma-related death rate for all ages is three times as high as for all whites.
Now, a theme issue of the Journal of Allergy and Clinical Immunology highlights eight projects on asthma that PCORI funded in 2013 through our first targeted funding announcement. Our Addressing Disparities program consulted many stakeholders to guide us in choosing this high-priority area for research.
In the theme issue, a paper by my former colleague Romana Hasnain-Wynia and myself shows how the interventions being tested in these studies are aligned to improve adherence to the national asthma guidelines. The studies are addressing key evidence gaps that could lead to improvements in health outcomes for African-American and Hispanic/Latino patients while balancing guideline-based care and patients’ individual needs. In addition, the theme issue contains papers by three individual PCORI-funded study teams and a paper by all eight teams that highlights obstacles to and strategies for study recruitment of African-American and Hispanic/Latino patients with asthma (see Table 1).
Tackling a Multi-Dimensional Problem
The great burden of asthma in the United States and the disparities in health outcomes convinced PCORI to make a major investment in comparative effectiveness research to improve patient-centered outcomes among African-American and Hispanic/Latino individuals with asthma. In our 2013 funding announcement, we sought projects that test methods to improve clinician and patient adherence to the National Asthma Education and Prevention Program’s guidelines in ways that reflect the needs of specific individuals and populations.
There are many potential obstacles to meeting the guidelines. Some clinicians may be unaware of the guidelines or not confident that their patients will implement the recommendations. Patients may have too little money, too much exposure to environmental triggers, language barriers, limited understanding of health concepts, or lack of access to care.
The eight projects we funded use varying strategies to address the challenge (see Table 2). Every team has worked with patients and other stakeholders to develop the study design, choose the outcomes to track, and aim for long-term sustainability of any programs found to have positive effects. In addition to these eight projects, PCORI has funded another eight in its $55 million asthma research portfolio.
Improving Adherence to Guidelines
Each of the PCORI-funded asthma studies highlighted in the theme issue has designed tailored interventions intended to enhance guideline-based care, fill research gaps, and change clinical practice. Both the national guidelines and PCORI’s eight studies emphasize combinations of interventions at home, in the community, and within health systems. All the interventions in the eight asthma studies include patient education in clinics or emergency departments. The studies tailor these programs to the needs of individuals by respecting cultural beliefs, focusing on health literacy, and improving asthma knowledge.
In a study in Houston, for example, clinicians take a detailed history of patients’ environmental health and provide them with a tailored education program that should help them follow the national guidelines. The education program focuses on a customized action plan, self-management, and avoidance of asthma triggers.
Five of the eight projects test interventions in which community health workers visit patients’ homes to address their needs and support lessons learned from clinicians about managing their asthma.
Four projects incorporate education of doctors, nurses, or other clinical staff to reinforce knowledge, attitudes, and actions to ensure that patients receive appropriate guideline-based care. Several studies also address system and clinical decision supports such as changing clinicians’ notetaking processes, creating teams of asthma-focused staff, and providing feedback to encourage clinicians to follow the guidelines. In one study taking place in Imperial County, California, a largely Latino community near the Mexican border, health systems are adding asthma educators and case managers to support clinicians.
Building a Knowledge Base
Every one of these studies is working to figure out what strategies works best, for whom, and under what circumstances. There is often greater power in looking for answers across studies. Four of the studies have agreed on outcome measures that will enable pooling of results.
Collectively, the studies should help us understand which interventions, and combinations of interventions, work best to improve patient and clinician adherence to asthma treatment guidelines. We expect this advancement of our understanding to help improve health outcomes and reduce health disparities related to this burdensome condition.
Table 1: Journal of Allergy and Clinical Immunology Theme Issue Articles about PCORI-Funded Research
Related PCORI Project
Ayodola Anise, MHS, and Romana Hasnain-Wynia, PhD, MS
All eight studies
Deborah Q. Shelef, MPH, et al.
Molly A. Martin, MD, MAPP, et al.
Tyra Bryant-Stephens, MD, et al.
C. Bradley Kramer, MPA, et al. (including all eight of the teams funded in 2013 to compare treatment options for African Americans and Hispanics/Latinos with asthma)
All eight studies
Table 2: Projects Funded in 2013 Comparing Treatment Options for African Americans and Hispanics/Latinos with Asthma
Andrea J. Apter, MD, MSc, MA
John Elder, MPH, PhD
Alex Federman, MD
Winifred J. Hamilton, MS, PhD
Jerry A. Krishnan, MD, PhD
James Stout, MD, MPH
Kaharu Sumino, MD, MPH
Stephen J. Teach, MD, MPH