Enhancing clinical trials participation though library partnerships

通过图书馆合作伙伴关系加强临床试验的参与

• 批准号: 9403450
• 负责人: MELISSA A. SIMON
• 金额: $ 9.88万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-12 至 2020-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9403450
• 关键词: Academic Medical Centers; Address; Americas; Chicago; Clinical Trials; Communication; Communication Tools; Communities; Community Health Aides; Community Hospitals; Computers; Demography; Development; Education; Elements; Enrollment; Ensure; Evolution; Focus Groups; Funding; Gatekeeping; Health; Health Personnel; Health Science Library; Health Sciences; Health system; Hospitals; Human; Information Technology; Institution; Interview; Knowledge; Learning; Left; Librarians; Libraries; Malignant Neoplasms; Measures; Minority; Modeling; Online Systems; Outcome; Output; Participant; Patient Education; Patients; Plant Roots; Population; Population Heterogeneity; Positioning Attribute; Poverty; Precision Medicine Initiative; Process; Public Health; Recording of previous events; Research; Research Personnel; Research Training; Resources; Role; Scanning; Science; Scientist; Standardization; Surveys; System; Testing; Time; Training Activity; Trust; Underrepresented Populations; Universities; Work; arm; base; biobank; cancer health disparity; community organizations; experimental study; gun violence; health care delivery; health disparity; implementation research; implementation science; implementation trial; improved; informant; innovation; literacy; medically underserved; medically underserved population; programs; prototype; racial and ethnic; stem; tool; tool development; user centered design; web-accessible; web-based tool

Underrepresentation of health disparity populations in clinical trials has the potential to exacerbate and perpetuate health disparities. There are several notable barriers to clinical trials participation, however low research literacy may be a key barrier yet rarely addressed. Few tools exist for enhancing clinical trials research literacy and promoting clinical trials resources for consumers, and fewer yet have been specifically developed for minority and underrepresented populations. Developed in conjunction with 28 partner institutions associated with the NCI funded Cancer Disparities Research Network, we have developed a clinical trials research literacy tool intended to clearly and simply explain elements of research and trials that are understandable, usable and useful to will empower diverse consumers to make fully informed decisions when considering enrollment in clinical trials. We seek to leverage information technology and library partnerships to transform the research literacy materials into a web-based tool and evaluate implementation of the tool in libraries and hospital patient education centers. Due to their accessibility and roles as information gatekeepers, librarians and health providers that serve medically underserved underrepresented populations are promising partners for disseminating clinical trials information. Thus, we propose to employ a user-centered design process to transform our current card-based tool to a functional, and more easily accessible web-based tool for consumers and a supplemental training module for librarians and health providers. Iterative prototype development will involve focus groups, an environmental scan of available clinical trials resources to identify opportunities to enhance the tool with direct linkages to local clinical trials, and key informant interviews among librarians and healthcare providers to inform the development of a supplemental training module applicable across libraries and patient education centers. Following development of the tool, leveraging the consolidated framework for implementation research (CFIR), we will deploy the tool among 10 libraries and patient education centers to evaluate factors influencing implementation and clinical trials participation outcomes. Pre- post surveys among n=125 library and patient education center patrons using the tool will assess outcomes related to research literacy and intentions to engage in clinical trials. A survey among n=50 librarians, community organization leaders, community health workers and healthcare providers will identify factors influencing the implementation of the research literacy tool in libraries, community organizations and hospital patient education centers. Results will be used to develop a generalizable model for health system - public library partnerships to sustain and disseminate the tool to other settings.

在临床试验中，健康差异人群的人数不足有可能加剧和 永久性健康差异。临床试验参与有几个值得注意的障碍，但是 研究素养可能是一个关键的障碍，但很少解决。很少有用于增强临床试验的工具 研究素养和促进消费者的临床试验资源，而较少的是专门的 为少数族裔和代表性不足的人口开发。与28个合作机构一起开发 与NCI资助的癌症差异研究网络相关，我们开发了一项临床试验 研究素养工具旨在清楚并简单地解释研究和试验的要素 可以理解，可用且有用的，将授权多样化的消费者做出充分明智的决定 考虑参加临床试验。我们寻求利用信息技术和图书馆合作伙伴关系 将研究素养材料转换为基于网络的工具，并评估该工具的实现 图书馆和医院患者教育中心。由于其可访问性和作为信息网守的角色， 为医疗服务不足的人群提供服务的图书馆员和卫生提供者很有希望 传播临床试验信息的合作伙伴。因此，我们建议采用以用户为中心的设计 将当前基于卡的工具转换为功能性，更容易访问的基于Web的工具的过程 消费者和图书馆员和卫生提供者的补充培训模块。迭代原型 开发将涉及焦点小组，这是一项可用临床试验资源的环境扫描，以识别 通过直接连接到本地临床试验的直接联系来增强工具的机会，以及关键的线人访谈 图书馆员和医疗保健提供者，以告知适用补充培训模块的开发 跨图书馆和患者教育中心。工具开发后，利用合并的 实施研究框架（CFIR），我们将在10个库和患者中部署工具 教育中心评估影响实施和临床试验参与成果的因素。 pre n = 125图书馆和患者教育中心使用该工具的调查将评估结果 与研究素养和参与临床试验的意图有关。 n = 50个图书馆员的调查， 社区组织领导者，社区卫生工作者和医疗保健提供者将确定因素 影响在图书馆，社区组织和医院实施研究素养工具的实施 患者教育中心。结果将用于开发卫生系统的可推广模型 - 公众 图书馆合作伙伴关系，以维持和传播该工具到其他设置。