Espinoza Juan, Sikder Abu Taher, Dickhoner James, Lee Thomas
Department of Pediatrics, Children's Hospital Los Angeles, Los Angeles, CA, United States.
Keck School of Medicine, University of Southern California, Los Angeles, CA, United States.
JMIR Form Res. 2021 Dec 8;5(12):e25833. doi: 10.2196/25833.
Health care databases contain a wealth of information that can be used to develop programs and mature health care systems. There is concern that the sensitive nature of health data (eg, ethnicity, reproductive health, sexually transmitted infections, and lifestyle information) can have significant impact on individuals if misused, particularly among vulnerable and marginalized populations. As academic institutions, nongovernmental organizations, and international agencies begin to collaborate with low- and middle-income countries to develop and deploy health information technology (HIT), it is important to understand the technical and practical security implications of these initiatives.
Our aim is to develop a conceptual framework for risk stratification of global health data partnerships and HIT projects. In addition to identifying key conceptual domains, we map each domain to a variety of publicly available indices that could be used to inform a quantitative model.
We conducted an overview of the literature to identify relevant publications, position statements, white papers, and reports. The research team reviewed all sources and used the framework method and conceptual framework analysis to name and categorize key concepts, integrate them into domains, and synthesize them into an overarching conceptual framework. Once key domains were identified, public international data sources were searched for relevant structured indices to generate quantitative counterparts.
We identified 5 key domains to inform our conceptual framework: State of HIT, Economics of Health Care, Demographics and Equity, Societal Freedom and Safety, and Partnership and Trust. Each of these domains was mapped to a number of structured indices.
There is a complex relationship among the legal, economic, and social domains of health care, which affects the state of HIT in low- and middle-income countries and associated data security risks. The strength of partnership and trust among collaborating organizations is an important moderating factor. Additional work is needed to formalize the assessment of partnership and trust and to develop a quantitative model of the conceptual framework that can help support organizational decision-making.
医疗保健数据库包含大量信息，可用于开发项目和完善医疗保健系统。人们担心健康数据的敏感性质（如种族、生殖健康、性传播感染和生活方式信息）如果被滥用，可能会对个人产生重大影响，特别是在弱势群体和边缘化人群中。随着学术机构、非政府组织和国际机构开始与低收入和中等收入国家合作开发和部署卫生信息技术（HIT），了解这些举措在技术和实际层面的安全影响非常重要。
我们的目标是为全球健康数据伙伴关系和HIT项目的风险分层制定一个概念框架。除了确定关键概念领域外，我们还将每个领域映射到各种可公开获取的指标，这些指标可用于构建定量模型。
我们对文献进行了综述，以确定相关出版物、立场声明、白皮书和报告。研究团队审查了所有来源，并使用框架法和概念框架分析来命名和分类关键概念，将它们整合到各个领域，并综合成一个总体概念框架。一旦确定了关键领域，就会搜索公共国际数据源以获取相关的结构化指标，以生成定量对应指标。
我们确定了5个关键领域来构建我们的概念框架：HIT状况、医疗保健经济学、人口统计学与公平性、社会自由与安全以及伙伴关系与信任。这些领域中的每一个都映射到了一些结构化指标。
医疗保健的法律、经济和社会领域之间存在复杂的关系，这影响了低收入和中等收入国家的HIT状况以及相关的数据安全风险。合作组织之间伙伴关系和信任的强度是一个重要的调节因素。需要开展更多工作来规范对伙伴关系和信任的评估，并开发一个概念框架的定量模型，以帮助支持组织决策。
