Journal of Clinical and Translational Science最新文献

{"title":"The importance of the integration of community engagement with biomedical informatics when assessing social determinants of health.","authors":"Linda B Cottler","doi":"10.1017/cts.2025.15","DOIUrl":"10.1017/cts.2025.15","url":null,"abstract":"","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e53"},"PeriodicalIF":2.1,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11975772/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143811617","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Building and implementation of a common infrastructure for specimen and data storage at an academic medical center.","authors":"Donna A Santillan, Laura S Jacobus, Michael D Henry, George J Weiner, Patricia L Winokur, Boyd M Knosp, Heath A Davis","doi":"10.1017/cts.2025.43","DOIUrl":"10.1017/cts.2025.43","url":null,"abstract":"<p><p>Precision or \"Personalized Medicine\" and \"Big Data\" are growing trends in the biomedical research community and highlight an increased focus on access to larger datasets to effectively explore disease processes at the molecular level versus the previously common one-size-fits all approach. This focus necessitated a local transition from independent lab and siloed projects to a single software application utilizing a common ontology to create access to data from multiple repositories. Use of a common system has allowed for increased ease of collaboration and access to quality biospecimens that are extensively annotated with clinical, molecular, and patient associated data. The software needed to function at an enterprise level while continuing to allow investigators the autonomy and security access they desire. To identify a solution, a working group comprised of representation from independent repositories and areas of research focus across departments was established and responsible for review and implementation of an enterprise-wide biospecimen management system. Central to this process was the creation of a unified vocabulary across all repositories, including consensus around source of truth, standardized field definitions, and shared terminology.</p>","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e76"},"PeriodicalIF":2.1,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12083205/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144093920","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Engage for equity plus: Transforming academic health centers to sustain patient/community engaged research structures, policies, and practices.","authors":"Shannon Sanchez-Youngman, Belkis Jacquez, Prajakta Adsul, Elizabeth Dickson, Tabia Henry Akintobi, LaShawn Hoffman, Lisa G Rosas, Starla Gay, Jason A Mendoza, Diane Mapes, John Oetzel, Donald Nease, Nina Wallerstein","doi":"10.1017/cts.2025.51","DOIUrl":"10.1017/cts.2025.51","url":null,"abstract":"<p><strong>Introduction: </strong>Community-based participatory research (CBPR) and patient/ community engaged research (P/CEnR) are shown to be effective approaches that improve health inequities, particularly among disadvantaged populations. While the science of CBPR demonstrates promising partnering practices that lead to effective interventions, there are institutional and structural barriers to creating and sustaining patient/community research within academic health centers (AHCs). As the field matures, there is a growing need to enhance patient/community leadership so that communities can set their own research agendas and priorities.</p><p><strong>Methods: </strong>Engage for Equity PLUS sought to address these challenges by implementing an engagement intervention aimed at transforming AHCs through supporting champion teams of academic, community, and patient partners to strengthen research infrastructures for P/CEnR. This paper uses a qualitative, case study analysis to describe how E2PLUS enabled champion teams at Stanford School of Medicine, Fred Hutchinson/University of Washington Cancer Consortium, and Morehouse School of Medicine to pursue institutional change strategies through coaching, workshops, contextual data analysis, and a community of practice.</p><p><strong>Results: </strong>This paper describes key themes of how E2Plus helped identify targets of change by a) using institutional data collection as core to generating critical consciousness of contextual conditions; b) implementing feasible E2PLUS strategies to leverage conditions for catalyzing a champion team for advocacy and achievable actions; c) identifying the critical role of patients/community members in stimulating change; and d) the role of continual collective reflection.</p><p><strong>Conclusion: </strong>We discuss the overall implications for E2 PLUS for other AHCs working toward sustainable community/patient engaged research policies and practices.</p>","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e80"},"PeriodicalIF":2.1,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12083203/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144093925","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A qualitative study of diversity in precision medicine research: The development and stakeholder assessment of a Diversity Decision Map.","authors":"Janet K Shim, Caitlin E McMahon, Larissa Saco, Michael Bentz, Nicole Foti, Sandra Soo-Jin Lee","doi":"10.1017/cts.2025.45","DOIUrl":"10.1017/cts.2025.45","url":null,"abstract":"<p><strong>Introduction: </strong>The diversity gap in precision medicine research (PMR) participation has led to efforts to boost the inclusion of underrepresented populations. Yet our prior research shows that study teams need greater support to identify key decision-making issues that influence diversity and equity, weigh competing interests and tradeoffs, and make informed research choices. We therefore developed a Diversity Decision Map (DDM) to support the identification of and dialogue about study practices that impact diversity, inclusion, and equity.</p><p><strong>Methods: </strong>The DDM is empirically derived from a qualitative project that included a content analysis of documents, observations of research activities, and interviews with PMR stakeholders. We identified activities that influenced diversity goals and created a visual display of decision-making nodes, their upstream precedents, and downstream consequences. To assess the potential utility of the DDM, we conducted engagements with stakeholder groups (regulatory advisors, researchers, and community advisors).</p><p><strong>Results: </strong>These engagements indicated that the DDM helped diverse stakeholder groups trace tradeoffs of different study choices for diversity, inclusion, and equity, and suggest paths forward. Stakeholders agreed that the DDM could facilitate discussion of tradeoffs and decision-making about research resources and practices that impact diversity. Stakeholders felt that different groups could use the DDM to raise questions and dilemmas with each other, and shared suggestions to increase the utility of the DDM.</p><p><strong>Conclusion: </strong>Based on a research life course perspective, and real-world research experiences, we developed a tool to make transparent the tradeoffs of research decisions for diversity, inclusion, and equity in PMR.</p>","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e78"},"PeriodicalIF":2.1,"publicationDate":"2025-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12083197/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144093809","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Developing a public-facing tool to monitor inclusion of special populations in clinical research.","authors":"Wendy K K Lam, James Goodrich, Sydney Sullivan, Keisha Bentley-Edwards, Dwight Koeberl, Devon Noonan","doi":"10.1017/cts.2025.48","DOIUrl":"10.1017/cts.2025.48","url":null,"abstract":"<p><p>Clinical trials have provided evidence for determining treatment effectiveness. However, clinical trial participants have been underrepresented by diverse and special population groups (e.g., younger and older adults, different races/ethnicities), contributing to disparities in our understanding of diseases and treatments in all those affected. Addressing these disparities in clinical trial participation would be critical to achieving health equity in the USA and beyond. To assess enrollment inclusivity in clinical research at a large academic medical center in the southeast, we used administrative information to develop a snapshot of clinical research participation by age, sex, race, ethnicity, and rurality that was accessible to the public. We compared research enrollment statistics with relevant geographic benchmarks (county, state, and national) from the 2020 US Census. Comparisons revealed 1) over-participation by females relative to county, state, and national benchmarks; 2) under-representation of Black/African Americans relative to county, but higher relative to state and national, levels; and 3) underrepresentation of Hispanic/Latino and Asian groups. The ISP Snapshot has promoted accountability and transparency in this institution's efforts toward health equity. The process has highlighted the need to update and standardize use of outdated categories (e.g., binary gender, rural status) that limit accurate reporting.</p>","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e75"},"PeriodicalIF":2.1,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12083199/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144093923","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Signals for change: A regional examination of rural clinical trial participant perspectives on values, health behaviors, and motivations for enrollment and retention in remote settings.","authors":"Elizabeth A Johnson, Danika L Comey, Bernadette McCrory","doi":"10.1017/cts.2025.47","DOIUrl":"10.1017/cts.2025.47","url":null,"abstract":"<p><p>There is a known disparity in clinical trial enrollment of rural-dwelling residents in the United States, largely due to financial constraints and travel burden. A big data study of an Intermountain West rural-serving healthcare system reported strong retention rates of historically underrepresented populations with adapted approaches. This exploratory qualitative descriptive study describes the lived experience and perceptions of eleven rural residents who participated or were interested in clinical trials from this healthcare system. Thematic analysis of interviews identified co-existing dualities between culture and traditional trial models, which suggest adapted designs are necessary to achieve opportunity equity in rural regions.</p>","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e77"},"PeriodicalIF":2.1,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12083195/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144093931","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using CTSA infrastructure to address health disparities in New York City communities: Barriers and facilitators to implementing a free health screening program.","authors":"Jifeng Jeff Zhu, Michael E Bales, Christine A Ganzer, Farid Aboharb, Allegra Keeler, Krista A Ryon, Ana C Benitez, Brett J Ehrmann, Julianne Imperato-McGinley","doi":"10.1017/cts.2025.46","DOIUrl":"10.1017/cts.2025.46","url":null,"abstract":"<p><p>The Weill Cornell Heart to Heart Community Outreach Campaign (H2H) is a free outreach program that provides mobile health screenings. The program brings medical and nursing faculty and students to the underserved, uninsured communities of New York City. Participants are screened for diabetes and heart disease risk factors through onsite exams, including point of care blood tests. If an abnormality is found, they receive a medical consultation to offer personalized advice and referrals to free/low-cost clinics when needed. The goal is to help underserved individuals understand their cardiometabolic health and to promote early intervention. This article describes the development of the program, including factors that were essential to the collaboration, challenges faced, barriers to implementation, and its evolution throughout the first 12 years. The program has benefited from strong foundational program leadership, effective inter-institutional collaboration, and maintaining community trust.</p>","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e70"},"PeriodicalIF":2.1,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11975767/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143811629","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Leveraging dissemination and implementation science to facilitate adoption of a human nutrition research e-learning course.","authors":"Denise Daudelin, Penny M Kris-Etherton, Alyssa Cabrera, Anna L Thompson, Kris M Markman, Linfei Chen, Alice H Lichtenstein","doi":"10.1017/cts.2025.44","DOIUrl":"10.1017/cts.2025.44","url":null,"abstract":"<p><strong>Background: </strong>Tufts Clinical and Translational Science Institute (CTSI) developed an online self-paced course to address the gap identified in critical thinking skills related to peer-reviewed nutrition science publications. Initial engagement was low, prompting the launch of a quality improvement project utilizing Dissemination and Implementation (D&I) science principles to enhance participation. This report details the development and execution of the dissemination strategy, course promotion methods, and outcomes related to participant engagement and feedback.</p><p><strong>Methods: </strong>A dissemination plan was designed and implemented using the Value-Added Research Dissemination Framework and the Consolidated Framework for Implementation Research (CFIR). Dissemination efforts targeted registered dietitians and university nutrition program instructors, along with their students.</p><p><strong>Results: </strong>During the active dissemination period from January to May 2023, the cumulative numbers of learners increased from 23 to 118. Instructors from three nutrition degree programs found the course valuable, reporting that it introduced new content or reinforced existing material. Learner participation continued past the active dissemination period into 2024. Findings from the course evaluation survey provided insights to guide future course improvements.</p><p><strong>Conclusion: </strong>This project demonstrates the successful use of D&I frameworks to support the dissemination and implementation of educational innovations such as online learning initiatives.</p>","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e71"},"PeriodicalIF":2.1,"publicationDate":"2025-03-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11975771/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143811567","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Medical students value advocacy and health policy training in undergraduate medical education: A mixed methods study.","authors":"Caroline Minnick, Kevin Alexander Soltany, Sudarshan Krishnamurthy, Maeve Murray, Roy Strowd, Kimberly Montez","doi":"10.1017/cts.2025.35","DOIUrl":"10.1017/cts.2025.35","url":null,"abstract":"<p><strong>Introduction: </strong>This study aimed to describe medical students' perceptions and experiences with health policy and advocacy training and practice and define motivations and barriers for engagement.</p><p><strong>Methods: </strong>This was a mixed-methods study of medical students from May to October 2022. Students were invited to participate in a web-based survey and optional follow-up phone interview. Surveys were analyzed using descriptive statistics. Phone interviews were audio-recorded, transcribed, and de-identified. Interviews were coded inductively using a coding dictionary. Themes were identified using thematic analysis.</p><p><strong>Results: </strong>35/580 survey responses (6% response rate) and 15 interviews were completed. 100% rated social factors as related to overall health. 65.7% of participants felt \"very confident\" or \"extremely confident\" in identifying social needs but only 11.4% felt \"very confident\" in addressing these needs. From interviews, six themes were identified: (1) participants recognized that involvement in health policy and/or advocacy is a duty of physicians; (2) participants acknowledged physicians' voices as well respected; (3) participants were comfortable identifying social determinants of health but felt unprepared to address needs; (4) barriers to future involvement included intimidation, self-doubt, and skepticism of impact; (5) past exposures and awareness of advocacy topics motivated participants to engage in health policy and/or advocacy during medical school; and (6) participants identified areas where the training on these topics excelled and offered recommendations for improvement, including simulation, earlier integration, and teaching on health-related laws and policies.</p><p><strong>Conclusions: </strong>This study highlights the importance of involvement in health policy and advocacy among medical students and the need for enhanced education and exposure.</p>","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e61"},"PeriodicalIF":2.1,"publicationDate":"2025-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11975784/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143811591","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A conversation with Aaron Richterman, MD, MPH, Assistant Professor of Medicine (Infectious Diseases), Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania.","authors":"","doi":"10.1017/cts.2025.25","DOIUrl":"https://doi.org/10.1017/cts.2025.25","url":null,"abstract":"","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":"9 1","pages":"e45"},"PeriodicalIF":2.1,"publicationDate":"2025-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12089845/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144110338","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}