电子登记系统：电子母婴健康登记系统的治理
eRegistries: governance for electronic maternal and child health registries.
作者信息
Myhre Sonja L, Kaye Jane, Bygrave Lee A, Aanestad Margunn, Ghanem Buthaina, Mechael Patricia, Frøen J Frederik
机构信息
Department of International Public Health, Norwegian Institute of Public Health, P.O. Box 4404, Nydalen, N-0403, Oslo, Norway.
Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Rosemary Rue Building, Old Road Campus, Headington, Oxford, OX3 7LF, UK.
出版信息
BMC Pregnancy Childbirth. 2016 Sep 23;16(1):279. doi: 10.1186/s12884-016-1063-0.
BACKGROUND
The limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children. Global health agencies, leaders, and funders are prioritizing strategies that focus on acquiring high quality health data. Electronic maternal and child health registries (eRegistries) offer a systematic data collection and management approach that can serve as an entry point for preventive, curative and promotive health services. Due to the highly sensitive nature of reproductive health information, careful consideration must be accorded to privacy, access, and data security. In the third paper of the eRegistries Series, we report on the current landscape of ethical and legal governance for maternal and child health registries in developing countries.
METHODS
This research utilizes findings from two web-based surveys, completed in 2015 that targeted public health officials and health care providers in 76 countries with high global maternal and child mortality burden. A sample of 298 public health officials from 64 countries and 490 health care providers from 59 countries completed the online survey. Based on formative research in the development of the eRegistries Governance Guidance Toolkit, the surveys were designed to investigate topics related to maternal and child health registries including ethical and legal issues.
RESULTS
According to survey respondents, the prevailing legal landscape is characterized by inadequate data security safeguards and weak support for core privacy principles. Respondents from the majority of countries indicated that health information from medical records is typically protected by legislation although legislation dealing specifically or comprehensively with data privacy may not be in place. Health care provider trust in the privacy of health data at their own facilities is associated with the presence of security safeguards.
CONCLUSION
Addressing legal requirements and ensuring that privacy and data security of women's and children's health information is protected is an ethical responsibility that must not be ignored or postponed, particularly where the need is greatest. Not only are the potential harm and unintended consequences of inaction serious for individuals, but they could impact public trust in health registries leading to decreased participation and compromised data integrity.
背景
母婴健康数据的有限可得性限制了降低孕妇和儿童死亡率及发病率方面的进展。全球卫生机构、领导者和资助者正在优先考虑专注于获取高质量卫生数据的策略。电子母婴健康登记系统（电子登记系统）提供了一种系统的数据收集和管理方法，可作为预防、治疗和促进性卫生服务的切入点。由于生殖健康信息具有高度敏感性，必须谨慎考虑隐私、访问和数据安全问题。在电子登记系统系列的第三篇论文中，我们报告了发展中国家母婴健康登记系统的伦理和法律治理现状。
方法
本研究利用了2015年完成的两项基于网络的调查结果，这些调查针对的是全球孕产妇和儿童死亡率负担较高的76个国家的公共卫生官员和医疗服务提供者。来自64个国家的298名公共卫生官员和来自59个国家的490名医疗服务提供者完成了在线调查。基于电子登记系统治理指导工具包开发过程中的形成性研究，这些调查旨在调查与母婴健康登记系统相关的主题，包括伦理和法律问题。
结果
根据调查受访者的说法，当前的法律状况特点是数据安全保障不足，对核心隐私原则的支持薄弱。大多数国家的受访者表示，医疗记录中的健康信息通常受到立法保护，尽管可能没有专门或全面处理数据隐私的立法。医疗服务提供者对其所在机构健康数据隐私的信任与安全保障措施的存在有关。
结论
满足法律要求并确保妇女和儿童健康信息的隐私和数据安全得到保护是一项不可忽视或推迟的伦理责任，特别是在需求最大的地方。不作为的潜在危害和意外后果不仅对个人严重，而且可能影响公众对健康登记系统的信任，导致参与度下降和数据完整性受损。
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