Juhi Salunke, Grace Byfield, Sabrina N Powell, Daniel F Torres, Grace Leon-Lozano, Jahnelle Jackson, Andreas K Orphanides, Jonathan Shaw, Thomas Owens, Jonathan S Berg, Elizabeth Branch, Lennin Caro, Stefanija Giric, Julianne M O'Daniel, Bradford C Powell, Ken Ray, Carla Robinson, Samantha Schilling, Nicole Shaw, Erin Song, Margaret Waltz, Megan C Roberts, Ann Katherine M Foreman, Kimberly Foss, Laura V Milko
{"title":"公共卫生遗传素养的社区合作:为公平基因组学研究和实践共同设计教育资源的方法。","authors":"Juhi Salunke, Grace Byfield, Sabrina N Powell, Daniel F Torres, Grace Leon-Lozano, Jahnelle Jackson, Andreas K Orphanides, Jonathan Shaw, Thomas Owens, Jonathan S Berg, Elizabeth Branch, Lennin Caro, Stefanija Giric, Julianne M O'Daniel, Bradford C Powell, Ken Ray, Carla Robinson, Samantha Schilling, Nicole Shaw, Erin Song, Margaret Waltz, Megan C Roberts, Ann Katherine M Foreman, Kimberly Foss, Laura V Milko","doi":"10.1159/000543227","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>Unequal representation in genetic and genomic research is due to various factors including historically inequitable and unjust institutional research practices, potential mistrust of biomedical research among underrepresented populations, and lack of access to or awareness of research opportunities. Facilitating sustainable dialogue between diverse communities and genetic researchers can cultivate trusting, bidirectional relationships, potentially encouraging greater participation in research. Herein, we describe the co-creation of public health educational materials and dissemination plans using an approach designed to address inequities and foster community dialogue.</p><p><strong>Methods: </strong>In this Methods paper, we describe the iterative co-creation of Genetics and Genomics educational modules by genetics clinicians, researchers, and community members. The goal of these modules is to enhance genetic literacy of the lay population to facilitate informed decision-making regarding genetic research and health services. We used Designing for Dissemination and Sustainability, grounded in Dissemination and Implementation science, and its Fit to Context process framework to guide the process. This approach ensures that the public health context and writing for a diverse audience are considered throughout the modules' development.</p><p><strong>Conclusion: </strong>This article offers an evidence-based template for adoption or adaptation by other community-engaged groups, aimed at bolstering equity and sustainability in the development of health care interventions and with an emphasis on accessible public health literacy. The co-creation by researchers and community members of both materials and dissemination plans may improve the cultural appropriateness and relevance of public health genetics campaigns. Ongoing research is needed to assess the impact of this approach on receptiveness and participation.</p>","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":"28 1","pages":"66-84"},"PeriodicalIF":1.5000,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11936475/pdf/","citationCount":"0","resultStr":"{\"title\":\"Community Collaboration in Public Health Genetic Literacy: Methods for Co-Designing Educational Resources for Equitable Genomics Research and Practice.\",\"authors\":\"Juhi Salunke, Grace Byfield, Sabrina N Powell, Daniel F Torres, Grace Leon-Lozano, Jahnelle Jackson, Andreas K Orphanides, Jonathan Shaw, Thomas Owens, Jonathan S Berg, Elizabeth Branch, Lennin Caro, Stefanija Giric, Julianne M O'Daniel, Bradford C Powell, Ken Ray, Carla Robinson, Samantha Schilling, Nicole Shaw, Erin Song, Margaret Waltz, Megan C Roberts, Ann Katherine M Foreman, Kimberly Foss, Laura V Milko\",\"doi\":\"10.1159/000543227\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Introduction: </strong>Unequal representation in genetic and genomic research is due to various factors including historically inequitable and unjust institutional research practices, potential mistrust of biomedical research among underrepresented populations, and lack of access to or awareness of research opportunities. Facilitating sustainable dialogue between diverse communities and genetic researchers can cultivate trusting, bidirectional relationships, potentially encouraging greater participation in research. Herein, we describe the co-creation of public health educational materials and dissemination plans using an approach designed to address inequities and foster community dialogue.</p><p><strong>Methods: </strong>In this Methods paper, we describe the iterative co-creation of Genetics and Genomics educational modules by genetics clinicians, researchers, and community members. The goal of these modules is to enhance genetic literacy of the lay population to facilitate informed decision-making regarding genetic research and health services. We used Designing for Dissemination and Sustainability, grounded in Dissemination and Implementation science, and its Fit to Context process framework to guide the process. This approach ensures that the public health context and writing for a diverse audience are considered throughout the modules' development.</p><p><strong>Conclusion: </strong>This article offers an evidence-based template for adoption or adaptation by other community-engaged groups, aimed at bolstering equity and sustainability in the development of health care interventions and with an emphasis on accessible public health literacy. The co-creation by researchers and community members of both materials and dissemination plans may improve the cultural appropriateness and relevance of public health genetics campaigns. Ongoing research is needed to assess the impact of this approach on receptiveness and participation.</p>\",\"PeriodicalId\":49650,\"journal\":{\"name\":\"Public Health Genomics\",\"volume\":\"28 1\",\"pages\":\"66-84\"},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2025-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11936475/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Public Health Genomics\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1159/000543227\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/12/19 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q4\",\"JCRName\":\"GENETICS & HEREDITY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Public Health Genomics","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1159/000543227","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/12/19 0:00:00","PubModel":"Epub","JCR":"Q4","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
Community Collaboration in Public Health Genetic Literacy: Methods for Co-Designing Educational Resources for Equitable Genomics Research and Practice.
Introduction: Unequal representation in genetic and genomic research is due to various factors including historically inequitable and unjust institutional research practices, potential mistrust of biomedical research among underrepresented populations, and lack of access to or awareness of research opportunities. Facilitating sustainable dialogue between diverse communities and genetic researchers can cultivate trusting, bidirectional relationships, potentially encouraging greater participation in research. Herein, we describe the co-creation of public health educational materials and dissemination plans using an approach designed to address inequities and foster community dialogue.
Methods: In this Methods paper, we describe the iterative co-creation of Genetics and Genomics educational modules by genetics clinicians, researchers, and community members. The goal of these modules is to enhance genetic literacy of the lay population to facilitate informed decision-making regarding genetic research and health services. We used Designing for Dissemination and Sustainability, grounded in Dissemination and Implementation science, and its Fit to Context process framework to guide the process. This approach ensures that the public health context and writing for a diverse audience are considered throughout the modules' development.
Conclusion: This article offers an evidence-based template for adoption or adaptation by other community-engaged groups, aimed at bolstering equity and sustainability in the development of health care interventions and with an emphasis on accessible public health literacy. The co-creation by researchers and community members of both materials and dissemination plans may improve the cultural appropriateness and relevance of public health genetics campaigns. Ongoing research is needed to assess the impact of this approach on receptiveness and participation.
期刊介绍:
''Public Health Genomics'' is the leading international journal focusing on the timely translation of genome-based knowledge and technologies into public health, health policies, and healthcare as a whole. This peer-reviewed journal is a bimonthly forum featuring original papers, reviews, short communications, and policy statements. It is supplemented by topic-specific issues providing a comprehensive, holistic and ''all-inclusive'' picture of the chosen subject. Multidisciplinary in scope, it combines theoretical and empirical work from a range of disciplines, notably public health, molecular and medical sciences, the humanities and social sciences. In so doing, it also takes into account rapid scientific advances from fields such as systems biology, microbiomics, epigenomics or information and communication technologies as well as the hight potential of ''big data'' for public health.