遗传性出血性疾病研究蓝图：健康服务、多样性、公平与包容及实施科学中的研究优先事项

数据集获取（Figshare）

• 源站标题：Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science
• DOI：10.6084/m9.figshare.22277845.v1
• 发布日期：2023-03-15
• 文件数：4 个
• 文件总体积：71.49 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/Building_the_foundation_for_a_community-generated_national_research_blueprint_for_inherited_bleeding_disorders_research_priorities_in_health_services_diversity_equity_and_inclusion_and_implementation_science/22277845

命令行下载

curl -L -o "Suppl Table S2 WG5 SOSRS HSR DEI IS.xlsx" "https://ndownloader.figshare.com/files/39620242"
curl -L -o "Suppl Table S3 WG5 SOSRS HSR DEI IS.xlsx" "https://ndownloader.figshare.com/files/39620245"
curl -L -o "Suppl Table S4 WG5 SOSRS HSR DEI IS.xlsx" "https://ndownloader.figshare.com/files/39620248"
curl -L -o "Supplementary Table S1 WG5 SOSRS HSR DEI IS.docx" "https://ndownloader.figshare.com/files/39620251"

文件清单

• Suppl Table S2 WG5 SOSRS HSR DEI IS.xlsx（20.57 KB）
• Suppl Table S3 WG5 SOSRS HSR DEI IS.xlsx（14.62 KB）
• Suppl Table S4 WG5 SOSRS HSR DEI IS.xlsx（17.60 KB）
• Supplementary Table S1 WG5 SOSRS HSR DEI IS.docx（18.70 KB）

文件总体积 71.49 KB（源站 API 实测）。

数据说明

The National Hemophilia Foundation (NHF) conducted extensive all-stakeholder inherited bleeding disorder (BD) community consultations to inform a blueprint for future research. Sustaining and expanding the specialized and comprehensive Hemophilia Treatment Center care model, to better serve all people with inherited BDs (PWIBD), and increasing equitable access to optimal health emerged as top priorities.
NHF, with the American Thrombosis and Hemostasis Network (ATHN), convened multidisciplinary expert working groups (WG) to distill priority research initiatives from consultation findings. WG5 was charged with prioritizing health services research (HSR); diversity, equity, and inclusion (DEI); and implementation science (IS) research initiatives to advance community-identified priorities.
WG5 identified multiple priority research themes and initiatives essential to capitalizing on this potential. Formative studies using qualitative and mixed methods approaches should be conducted to characterize issues and meaningfully investigate interventions. Investment in HSR, DEI and IS education, training, and workforce development are vital.
An enormous amount of work is required in the areas of HSR, DEI, and IS, which have received inadequate attention in inherited BDs. This research has great potential to evolve the experiences of PWIBD, deliver transformational community-based care, and advance health equity.
Research into how people get their health care, called health services research, is important to understand if care is being delivered equitably and efficiently. This research figures out how to provide the best care at the lowest cost and finds out if everyone gets equally good care. Diversity and inclusion research focuses on whether all marginalized and minoritized populations (such as a given social standing, race, ethnicity, sex, gender identity, sexuality, age, income, disability status, language, culture, faith, geographic location, or country of birth) receive equitable care. This includes checking whether different populations are all getting the care they need and looking for ways to improve the care. Implementation science studies how to make a poten

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.22277845.v1（source: https://tandf.figshare.com/articles/dataset/Building_the_foundation_for_a_community-generated_national_research_blueprint_for_inherited_bleeding_disorders_research_priorities_in_health_services_diversity_equity_and_inclusion_and_implementation_science/22277845）。