Integrating Community Knowledge into Electronic Health Records: Reimagining Childhood Asthma Care

Background and Purpose

Effective childhood asthma management depends on collaboration among researchers, healthcare providers, community organizations, and caregivers. Without meaningful engagement, health research risks reinforcing epistemic injustice by overlooking the lived experiences of marginalized groups. Our interdisciplinary team—including health informaticists, nurses, computer scientists, social workers, and the community advocacy group Philly Thrive—is developing a family- and community-centered health platform that prioritizes caregiver involvement.

Asthma affects approximately 300 million people worldwide and remains a leading chronic disease in children. Its management requires not only medication but also education, self-management, and caregiver support. Although electronic health records (EHRs) have the potential to assist caregivers in tracking their child's care, current systems are often designed for clinical use rather than for patient or caregiver engagement. Centering lived experience in EHR design is essential for promoting equity, improving communication, and enhancing care coordination. This study explores how caregivers of children with asthma engage with EHRs and share health information across care networks.

Methods

Philly Thrive recruited 15 Black female caregivers (mean age: 41.7) from the greater Philadelphia area, each supporting a child with asthma. Semi-structured interviews were conducted by team members to explore their experiences using EHRs and their recommendations for improvement. Interviews were transcribed, coded, and analyzed using thematic analysis, with themes refined through collaborative discussion.

Results

Caregivers reported using EHRs primarily to check their child's current health status and medications. As one participant shared, "The first thing I look for is her status; if she goes to a checkup, I will look and see what the doctor says. Is it looking good? I also tend to immediately look at the medicine they prescribe." Caregivers valued access to this information to verify accuracy and remain informed.

Several interviewees described how prior experience with asthma in their families made them feel more prepared. "It was easier because she knew what to do, because both my sister and my dad had it, so it definitely killed my nervousness or anxiety," one caregiver explained. Another noted the strength of their support system: "So everyone in my support system, they know what to do, what to look for. We are familiar with this asthma thing. It's unfortunate, but we just on point with it."

Caregivers also used EHRs to share information with schools or other healthcare providers. "A doctor's note, I used to screenshot and email it to the school." said one participant. Another added, "If I need to access his records, it is to share them with other medical providers. I really don't access them too much."

Conclusions and Implications

These findings highlight the value of community and familial knowledge in managing childhood asthma. Caregivers use EHRs not just to access information but also to communicate with schools and providers, supporting coordinated care. Their insights suggest that redesigning EHRs to improve usability and information sharing can empower caregivers and promote equitable, community-informed health systems. Integrating lived experience into health technology development is essential to building inclusive platforms that truly support the needs of families.