The case analysis revealed new insights into the characteristics of these themes, which the authors then grouped into three categories: foundational attributes of successful community-academic partnership, potential challenges of community-academic partnerships, and outcomes of community-academic partnerships. The insights gained from these reports further supports previous research extolling the benefits of community-academic partnerships and provides valuable direction for future partners, funders and evaluators in how to deal with challenges and what they can anticipate and plan for in developing and managing community-academic partnership projects.
Background: Mendelian disorders are individually rare but collectively common, forming a "long tail" of genetic disease. More than 20 million people worldwide suffer from a disease in this long tail before the age of 25, with minorities and developing countries at highest risk and with the number of carriers far in excess of this figure. Importantly, the Jewish community’s campaign for universal Tay-Sachs screening shows that these incurable diseases can nevertheless be prevented if carrier status is known before conception. A single highly-accurate assay for the long tail of Mendelian disease would allow us to scale this successful campaign up to the general population, thereby improving millions of lives, greatly benefiting minority health, and saving billions of dollars.*Methods and Findings:*We have addressed the need for such an assay by designing the Universal Genetic Test (UNIT), a non-invasive, saliva-based carrier test for more than 100 Mendelian diseases across all major population groups. We exhaustively validated the test with a median of 147 positive and 525 negative samples per variant. By combining probes for risk alleles with family history information, we show that we can achieve extremely high levels of accuracy (median 95% CI [0.99988, 0.999999]), precision (median 95% CI [0.99993, 0.99999]), sensitivity (median 95% CI [0.99988, 0.999999]), and specificity (median 95% CI [0.99643, 1]) at the level of individual mutations. In particular, through a combination of replicated probes and confirmatory testing, we are able to reliably detect rare alleles at q ≈ 1/1000 with positive predictive values above 0.995. To put this in context, this performance for a multiplex assay compares favorably with FDA-approved single-gene carrier tests. Conclusions: The UNIT represents a dramatic reduction in the cost and complexity of large scale population screening. With a single inexpensive assay for a substantial fraction of the global Mendelian disease burden, an end to many preventable genetic diseases is now in sight. Moreover, given that the assay requires only a saliva sample, it is for the first time feasible to contemplate an "at-home carrier test" as a successor to the at-home pregnancy test.*Authors' note:*_Nature Precedings is a preprint server used by scientists to communicate results in advance of the often lengthy publication process. This manuscript is a preprint and has not yet been accepted for publication by a peer-reviewed journal. It is currently undergoing expedited review at a peer-reviewed journal and is posted publicly to allow collegial feedback in advance of publication. Please address technical comments to balajis@stanford.edu_
IntroductionCommunity engagement (CE) has become more prevalent among academic health centers (AHCs), with significant diversity in practices and language. The array of approaches to CE contributes to confusion among practitioners.MethodsWe have reviewed multiple models of CE utilized by AHCs, Clinical and Translational Science Awards, and higher education institutions overall. Taking these models into consideration, we propose a comprehensive model of CE that encompasses a broader spectrum of activities and programs.ResultsThe CE Components Practical Model includes 5 components: Community Outreach and Service, Education, Clinical Care, Research, and Policy and Advocacy. The components are supported by the foundational elements within administrative functions and infrastructure.ConclusionsThis model will accomplish the following: (1) reduce confusion about CE; (2) provide a broader understanding of CE; and (3) increase the ability of CE practitioners to interact with each other through this common reference and engage in advancing CE scholarship.
Beyond medical schools’ historical focus on pillar missions including clinical care, education, and research, several medical schools now include community engagement (CE) as a mission. However, most academic health systems (AHSs) lack the tools to provide metrics, evaluation, and standardization for quantifying progress and contributions of the CE mission. Several nationwide initiatives, such as that driven by the Institute of Medicine recommending advances in CE metrics at institutions receiving Clinical and Translational Science Awards, have encouraged the research and development of systematic metrics for CE, but more progress is needed. The CE components practical model provides a foundation for analyzing and evaluating different types of CE activities at AHSs through five components: research, education, community outreach and community service, policy and advocacy, and clinical care. At the Medical College of Wisconsin (MCW), an annual survey administered to faculty and staff assessed the types and number of CE activities from the prior year. Survey results were combined to create a CE report for departments across the institution and inform MCW leadership. Insights gathered from the survey have contributed to next steps in CE tracking and evaluation, including the development of a CE dashboard to track CE activities in real time. The dashboard provides resources for how individuals can advance the CE mission through their work and guide CE at the institutional level.
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