MUSC Alpha-1 Community Partnership

The MUSC Alpha-1 Research Partnership was initiated as a community-based participatory research (CBPR) project, an applied collaborative approach that engages community members and researchers, and applies their shared knowledge towards the goal of influencing changes to promote community health and reduce health disparities. It's main goal is to increase community participation in the research process.

The MUSC Alpha-1 Research Partnership represents a collaboration between Alpha-1 research experts and Alpha-1 patients. The partnership consists of Alpha-1 community members and academic partners. The research partnership is unique from traditional medical research in that it serves to enable Alpha-1 patients to have a shared voice in evidence based behavioral research that seeks to improve the social (environment + lifestyle) outcomes of those living and affected by alpha-1 antitrypsin deficiency. These voices are represented by Alpha-1 patients serving as research partners, advisors, and active participants through focus groups, interviews and surveys. Importantly, collaboration and integration with the missions and products of the Alpha-1 Foundation is the long term study goal of the program.

This collaboration's first task was to establish research priorities. From the expressed interest of community members a Photovoice study was established. Photovoice, a registered charity, promotes the use of photography and digital storytelling in order to bring attention to disadvantaged and marginalized communities. The aim of using Photovoice was to give Alphas an opportunity to describe social burdens shared within the Alpha-1 community. Below are some examples of what they shared.

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