Background: Hispanics are the largest minority group in the United States, with 2.2 million reporting they have asthma. The current asthma prevalence rate for Hispanics is 6.4 percent. They are twice as likely to visit the emergency room for asthma and 20 percent more likely to die from asthma than non-Hispanic whites. Patient engagement in management and treatment is an important factor in helping individuals to effectively self-manage chronic disease. The emergence of COVID-19 in the United States has put those living with underlying medical conditions at even greater risk. Nearly 90 percent of those hospitalized with COVID-19 have underlying medical conditions, including hypertension, obesity, chronic lung disease, diabetes, and heart disease. They are significantly impacted by morbidity and mortality related to asthma and disproportionately affected by COVID-19. Hispanic Americans hold concerning prevalence rates of these conditions. Hispanics have the third highest hospitalization rate for COVID-19 and are more than twice as likely to die from COVID-19 than non-Hispanic whites. The barriers that inhibit Hispanics from participating in research are varied and require a multifaceted approach to overcome and improve minority participation. Under-enrollment of racial and ethnic minorities in clinical research reduces the generalizability in studies.
Proposed Solution to the Problem: AAN will bring together Hispanic patients, caregivers, families, faith leaders, medical experts, and researchers for a virtual conference to address specific issues leading to asthma and COVID-19 disparities. Training for Hispanic patients/community to learn more about PCOR/CER and how to engage will also be addressed.
• Work with National Hispanic Health Foundation to develop an agenda
• Disseminate PCOR/CER research findings for asthma
• Define emerging research needs for Hispanic asthma/COVID-19 patients
• Gain insights on how to engage Hispanic patients in PCOR/CER and how to expand Not One More Life (NOML) virtually
• Discuss the unique needs for engaging the Hispanic community in PCOR/CER
• Examine PCORI-funded research findings for asthma and for PCOR that successfully engaged Hispanics
• Define emerging research needs regarding Hispanics with asthma and COVID-19
• Define what is important to Hispanic asthma patients to effectively engage them in PCOR/CER
• Define what virtual formats would be preferred by Hispanic patients with asthma to effectively engage in PCOR/CER
• Discuss and explore how the NOML framework can be leveraged to engage Hispanic patients in PCOR/CER
• Discuss what researchers need to know to connect with the NOML network
• Define capacity issues and training needs to expand NOML using new online methods to train and engage patients
Activities: Convene Hispanic asthma patient advocates, patients, faith leaders, and researchers to develop a robust agenda to participate in a series of six virtual, live sessions beginning in November 2021. Sessions will be open to the public. The goal is to recruit 100 Hispanic asthma patients/families. A project advisory group will lead all aspects of planning for the virtual conference. Sessions will be interactive with speakers, panelists through polling questions, pre- and post-tests, chats, Q&As. A private Facebook page will be used by those interested in participating (voluntarily) for ongoing engagement between sessions.
Projected Outcomes and Outputs: Create virtual design and production, evaluation for each session, training materials, identify PCOR questions.
Patient and Stakeholder Engagement Plan:
Project advisory group will be involved in all aspects of virtual conference; AAN staff support conference, digital platform, design/graphics, marketing; attendees engage with digital tools, speakers, and panel. Faith leaders and NHMA will engage with community and recruitment for the project.
Project Collaborators: Allergy & Asthma Network, National Hispanic Medical Association.