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In 2017, the Michigan Institute for Clinical and Health Research (MICHR) and community partners in Flint, Michigan collaborated to launch a research funding program and evaluate the dynamics of those research partnerships receiving funding. While validated assessments for community-engaged research (CEnR) partnerships were available, the study team found none sufficiently relevant to conducting CEnR in the context of the work. MICHR faculty and staff along with community partners living and working in Flint used a community-based participatory research (CBPR) approach to develop and administer a locally relevant assessment of CEnR partnerships that were active in Flint in 2019 and 2021.
Surveys were administered each year to over a dozen partnerships funded by MICHR to evaluate how community and academic partners assessed the dynamics and impact of their study teams over time.
The results suggest that partners believed that their partnerships were engaging and highly impactful. Although many substantive differences between community and academic partners’ perceptions over time were identified, the most notable regarded the financial management of the partnerships.
This work contributes to the field of translational science by evaluating how the financial management of community-engaged health research partnerships in a locally relevant context of Flint can be associated with these teams’ scientific productivity and impact with national implications for CEnR. This work presents evaluation methods which can be used by clinical and translational research centers that strive to implement and measure their use of CBPR approaches.
Pompe disease results from lysosomal acid α-glucosidase deficiency, which leads to cardiomyopathy in all infantile-onset and occasional late-onset patients. Cardiac assessment is important for its diagnosis and management. This article presents unpublished cardiac findings, concomitant medications, and cardiac efficacy and safety outcomes from the ADVANCE study; trajectories of patients with abnormal left ventricular mass z score at enrolment; and post hoc analyses of on-treatment left ventricular mass and systolic blood pressure z scores by disease phenotype, GAA genotype, and “fraction of life” (defined as the fraction of life on pre-study 160 L production-scale alglucosidase alfa). ADVANCE evaluated 52 weeks’ treatment with 4000 L production-scale alglucosidase alfa in ≥1-year-old United States of America patients with Pompe disease previously receiving 160 L production-scale alglucosidase alfa. M-mode echocardiography and 12-lead electrocardiography were performed at enrolment and Week 52. Sixty-seven patients had complete left ventricular mass z scores, decreasing at Week 52 (infantile-onset patients, change −0.8 ± 1.83; 95% confidence interval −1.3 to −0.2; all patients, change −0.5 ± 1.71; 95% confidence interval −1.0 to −0.1). Patients with “fraction of life” <0.79 had left ventricular mass z score decreasing (enrolment: +0.1 ± 3.0; Week 52: −1.1 ± 2.0); those with “fraction of life” ≥0.79 remained stable (enrolment: −0.9 ± 1.5; Week 52: −0.9 ± 1.4). Systolic blood pressure z scores were stable from enrolment to Week 52, and no cohort developed systemic hypertension. Eight patients had Wolff–Parkinson–White syndrome. Cardiac hypertrophy and dysrhythmia in ADVANCE patients at or before enrolment were typical of Pompe disease. Four-thousand L alglucosidase alfa therapy maintained fractional shortening, left ventricular posterior and septal end-diastolic thicknesses, and improved left ventricular mass z score.
Social Media Statement: Post hoc analyses of the ADVANCE study cohort of 113 children support ongoing cardiac monitoring and concomitant management of children with Pompe disease on long-term alglucosidase alfa to functionally improve cardiomyopathy and/or dysrhythmia.
OBJECTIVES/SPECIFIC AIMS: Explore perceptions of Flint stakeholders on the water crisis regarding trust and the capacity of faith and community-based organizations providing public health services to address community needs. Analyze the community’s voice shared at (1) 17 key community communications (community/congressional meetings and events), and (2) during 9 focus group sessions, in which residents, faith-based leadership and other stakeholders discuss issues and concerns on the Flint Water Crisis, and recommend ways to address them. Develop a framework that defines core theories, concepts and strategies recommended by the community to help rebuild trust and the quality of life in Flint, Michigan, and support other communities experiencing environmental stress. METHODS/STUDY POPULATION: Study population: faith-based leaders, seniors, youth, Hispanic/Latino and African American stakeholders, and others experiencing inequities in the city of Flint. Convene 9 focus group sessions (recorded and transcribed) to learn community perceptions on trust and ways to address it. Validate accuracy of the transcriptions with community consultants to reconcile any inaccurate information. Through a community engaged research (CEnR) process, review and analyze qualitative data from the 9 focus group sessions, and quantitative data from 2 surveys documenting (1) demographic backgrounds of focus group participants, and (2) their perceptions on trust and mistrust. Prepare a codebook to qualitatively analyze the focus group data summarizing community input on trust, mistrust, changes in service delivery among community and faith-based organizations, and ways to re-build trust in the city of Flint. Transcribe the community’s voice shared during 17 key events, identified by a team of community-academic stakeholders (i.e., UM Flint water course, congressional and community events, etc.), in which residents and other stakeholders discuss issues and concerns on the Flint Water Crisis, and recommend ways to address it. Qualitatively analyze the transcriptions, using a CEnR process to prepare a codebook on key themes from the community’s voice shared at these events, and recommendations on ways to address it. Compare and contrast findings between the two codebooks developed from (1) the focus group data and (2) qualitative analysis of community voice during public meetings and events. Synthesize this information into a framework of core theories, concepts and rebuilding strategies for Flint, Michigan. RESULTS/ANTICIPATED RESULTS: It is important to note many undocumented immigrant populations in Flint fear deportation and other consequences, hampering their ability to obtain service and provide community voice. Through our purposive sampling approach, we will hear from community voices not often included in narratives (i.e., seniors, youth, Hispanic/Latino residents). The presentation will present findings documenting levels of trust and mistrust in the city of Flint; and a framework of recommendations, core theories and concepts on ways to reduce, rebuild and eliminate stress that will be helpful to other communities experiencing distress. DISCUSSION/SIGNIFICANCE OF IMPACT: To our knowledge, levels of trust and mistrust in Flint have not been documented thus far. We will compare and contrast common themes presented by the community at public meetings and events with themes presented in our focus group effort on trust. Faith and community-based providers were among the first responders to the Flint Water Crisis. The effort will also share perceptions on changes in public health service delivery, and observations on preparedness for these roles that occurred among community and faith-based providers. Finally, the effort will (1) support the design of a research agenda, (2) define a framework of core theories, concepts and recommendations developed by the community to help rebuild trust in Flint, Michigan; and (3) support other communities addressing environmental distress.
An estimated 800 million people live within 100 km of an active volcano in 86 countries and additional overseas territories worldwide [see Chapter 4 and Appendix B]1. Volcanoes are compelling evidence that the Earth is a dynamic planet characterised by endless change and renewal. Humans have always found volcanic activity fascinating and have often chosen to live close to volcanoes, which commonly provide favourable environments for life. Volcanoes bring many benefits to society: eruptions fertilise soils; elevated topography provides good sites for infrastructure (e.g. telecommunications on elevated ground); water resources are commonly plentiful; volcano tourism can be lucrative; and volcanoes can acquire spiritual, aesthetic or religious significance. Some volcanoes are also associated with geothermal resources, making them a target for exploration and a potential energy resource.
Much of the time volcanoes are not a threat because they erupt very infrequently or because communities have become resilient to frequently erupting volcanoes. However, there is an everpresent danger of a long-dormant volcano re-awakening or of volcanoes producing anomalously large or unexpected eruptions. Volcanic eruptions can cause loss of life and livelihoods in exposed communities, damage or disrupt critical infrastructure and add stress to already fragile environments. Their impacts can be both short-term, e.g. physical damage, and long-term, e.g. sustained or permanent displacement of populations. The risk from volcanic eruptions and their attendant hazards is often underestimated beyond areas within the immediate proximity of a volcano. For example, volcanic ash hazards can have effects hundreds of kilometres away from the vent and have an adverse impact on human and animal health, infrastructure, transport, agriculture and horticulture, the environment and economies. The products of volcanism and their impacts can extend beyond country borders, to be regional and even global in scale.
Although known historical loss of life from volcanic eruptions (since 1600 AD about 280,000 fatalities are recorded, Auker et al. (2013)) is modest compared to other major natural hazards, volcanic eruptions can be catastrophic for exposed communities. In 1985 the town of Armero in Colombia was buried by lahars (volcanic mudflows) with more than 21,000 fatalities due to relatively small explosive eruptions at the summit of Nevado del Ruiz volcano that partially melted a glacier (Voight, 1990).
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