Background: More than 25 million Americans have asthma. The current rate for African Americans (AA) with asthma is 10.6 percent, which is higher than that of the white or Hispanic populations. AA women are 20 percent more likely to have asthma than whites. The AA community is significantly impacted by the number of deaths related to asthma. African Americans are three times more likely to die from asthma-related causes than the white population. Patient engagement in management and treatment is an important factor in helping African Americans to effectively self-manage. With COVID-19, African Americans living with health conditions such as asthma, diabetes, obesity, and high blood pressure are at greater risk. African Americans make up a disproportionate number of COVID-19 deaths. Underrepresentation of minority populations in clinical research is an ongoing challenge that reduces the overall confidence in research findings. Barriers to recruiting AA include distrust in research, compensation, education, and lack of interest. To impact asthma disparities in African Americans, efforts to increase participation of minorities in patient-centered research need to include patient engagement programs that address barriers. This is especially important in the context of COVID-19 due to the devastating impact the disease has on the AA community.
Proposed Solution: Use Not One More Life’s (NOML) framework, which involves working with faith-based leaders and healthcare community leaders to engage AA asthma patients in a screening and educational program to help them manage their asthma better, and expand it to include COVID-19 and patient-centered outcomes research. This project will provide six live digital sessions for asthma patients, families, HCP, researchers, and policy makers to participate in discussing issues around asthma, COVID-19, and patient-centered research for AA. A planning group that includes patients will develop the program, invite speakers, provide literature, and develop materials from the project findings. Asthma patients will share real-life experiences; asthma and COVID-19 experts will provide education and tips for prevention and management; faith-based leaders will join the discussion; and researchers will provide information about how to get involved with patient-centered outcomes research.
Objectives: Develop insights that will inform emerging research needs as it relates to patients, future plans to expand NOML beyond asthma education to include COVID-19, and digital programs to educate patients to become participants in all aspects of patient-centered outcomes research.
Activities: Recruit people for a patient advisory group and hold monthly teleconferences, conduct literature review, plan agenda, develop patient compensation plan, outline platform selections, select speakers, invite attendees, promote the event, hold live sessions at one month and six months, evaluate project, and provide post-session materials.
- Digital program model for future events
- Training materials and digital strategy, education for future training
- Summary of identified research needs important to asthma community in context of COVID-19; present to community
- Patient-focused materials, lessons learned
- Physician-focused materials, including abstracts or articles
Patient Engagement Plan: Patients, faith-based leaders, asthma experts, and researchers will be given equal roles and decision-making capabilities. The team will provide literature review, program design, speakers’ topics, and program outcomes/materials. Patient and other stakeholder attendees will participate in discussions and learn about patient-centered research.
Project Collaborators: Allergy Asthma Network Not One More Life; Laverne Carter, PhD, Elliot Israel, MD (PCORI-funded researchers).