Innovative Educational-Empowerment-Empathy Networks For/by Allergic-Immunodeficient Children/Teens/Adults – Inclusive Model Towards Health Literacy Reproducible Across Chronic Diseases

Allergic and immunologic diseases are misunderstood, can be fatal and carry stigma triggering fears and instilling confusion that risk health consequences and discrimination, especially for HIV, food allergies (FA) and primary immunodeficiencies (PID) persons. Each disease-population has its own specifics yet have in common needs for chronic illness coping and understanding. Educational networks linked to cross-cultural communication can effectively dissolve myths by including the persons affected as learners-leaders. We developed an education-empowerment-empathy model designed for/by patients applied to HIV, FA and PID populations to land effective health literacy networks integral to their healthcare. Needs Assessment Model. Academic Medical Center, Allergy/Immunology Service: All patients (all ages)/families as participants/champions/volunteers of their own program as content-influencers/co-designers of recurring curricula-science-social-forum (on-site/digital), “hot topics”. HIV/FA/PID, targeted diseases. Three distinct effective education-empowerment-empathy networks were co-created by patients/families with HIV/FA/PID aligned with professional guidance/institution support, resulting in: earned hospital/community awards; patients as teachers/mentors; co-authored enduring educational tools; robust health quality and literacy; 50-200 affected persons/digital/in-person; global reach; reproducible: Kids Council-Caregivers League, 15-yr HIV; Food Allergy Symposium, 5-yr FA; Davids’ Champions, 1-yr PID. HIV/FA/PID persons have needs to create effective education-empowerment-empathy networks, allowing safe expression of their attitudes/beliefs to reach evidence-based answers sensitive to cultural differences to dispel myths and overcome stigma. By needs assessment, medical home support and health literacy/disparity attention, this HIV/FA/PID model is powerful for a trustful exchange of truth because of valued inclusion of affected persons and may also have impact across chronic diseases, especially highly-charged, fear-inducing and fatal ones, such as COVID19.