Patient Voices Network: Bringing Breast Cancer Awareness and Action into Underserved Communities.

BACKGROUND/PURPOSE: African American women are diagnosed with breast cancer at later stages and have higher mortality rates than white women. The Patient Voices Network (PVN), a community group whose vision is "a community of educated and involved patients working hand in hand with physicians in making decisions about their own health care," conceived of and implemented a walk to raise awareness of breast cancer and link women to screening resources in a low-income, urban community OBJECTIVES: To describe the planning and implementation of the Concerned About You: Breast Cancer Awareness Walk & Wellness Event and its impact on an academic community partnership. METHODS: A narrative approach was used. Meeting minutes and event planning notes were reviewed. Community participation rates and participant satisfaction were tracked using registration records and a survey administered at the event. RESULTS: 328 community members registered and 194 attended. Responses to a satisfaction survey indicated community buy-in and interest in future events. Two women were screened at the event and 78 were screened at a follow-up opportunity at their primary care practices. The process was driven by participatory guidelines and laid the foundation for future activities. CONCLUSIONS: Community input addressed the need for screening mammography in an underserved community. The partnership approach featured complementary strengths of both patients and University staff, fostered skill building and co-learning, and ultimately strengthened our partnership. A partnered approach may be effective in engaging hard-to-reach populations to address health disparities.

Novel α-Globin Splice Site Mutation (HBA2: c.96-5C>A) in Combination with Three-Gene Deletion Hb H Disease.

The choice of acceptor splice site during exon-exon splicing by the spliceosome is determined by a variety of factors. We report here a family with a novel acceptor splice site variant within intron 1 of the α-globin gene that provides some in vivo insight into the rules governing RNA splicing in homo sapiens. A 2-year-old female with Hb H disease, was found to have not only three α-globin genes deleted (- -FIL/-α3.7) but also a HBA2: c.96-5C>A variant on her remaining α-globin gene. The HBA2: c.96-5C>A variant was in cis with -α3.7 and mRNA studies indicate that this variant creates a new acceptor splice site which is used in approximately 35.0% of α-globin mRNA transcripts. The reduced levels of normal mRNA transcript predicts a more severe Hb H disease than expected for the three-gene deletion Hb H disease with a phenotype similar to nondeletional Hb H disease. We propose that this variant be called Hb Beach Haven (HBA2: c.96-5C>A).

Home Improvement in HIV Primary Care: Investigating the Patient-Centered Medical Home Model for People Living with HIV/AIDS.

This article details the processes and findings of a 3-year demonstration project implementing population health management and the Patient-Centered Medical Home (PCMH) model in 3 community health centers in Alameda County, California. The article provides a first look at the PCMH Continuum, a tool for aiding staff in conceptualizing and implementing complex organizational change. Findings of the project evaluation also are shared, comprising a road map for other organizations looking to implement population health management, panel management, and PCMH. The article reflects on lessons learned and best practices from the demonstration project.