Department of Bioinformatics, Columbia University, New York, New York, USA.
J Am Med Inform Assoc. 2014 Mar-Apr;21(2):204-11. doi: 10.1136/amiajnl-2013-002117. Epub 2013 Oct 29.
Large amounts of personal health data are being collected and made available through existing and emerging technological media and tools. While use of these data has significant potential to facilitate research, improve quality of care for individuals and populations, and reduce healthcare costs, many policy-related issues must be addressed before their full value can be realized. These include the need for widely agreed-on data stewardship principles and effective approaches to reduce or eliminate data silos and protect patient privacy. AMIA's 2012 Health Policy Meeting brought together healthcare academics, policy makers, and system stakeholders (including representatives of patient groups) to consider these topics and formulate recommendations. A review of a set of Proposed Principles of Health Data Use led to a set of findings and recommendations, including the assertions that the use of health data should be viewed as a public good and that achieving the broad benefits of this use will require understanding and support from patients.
大量的个人健康数据正通过现有的和新兴的技术媒体和工具被收集和提供。尽管这些数据的使用具有极大的潜力,可以促进研究、提高个人和人群的医疗质量,并降低医疗成本,但在充分实现其价值之前,必须解决许多与政策相关的问题。这些问题包括需要广泛达成一致的数据管理原则,以及采取有效措施减少或消除数据孤岛并保护患者隐私。AMIA 2012 年健康政策会议汇集了医疗保健学者、政策制定者和系统利益相关者(包括患者群体的代表),以审议这些议题并制定建议。对一组拟议的健康数据使用原则的审查导致了一系列发现和建议,包括断言,健康数据的使用应被视为公共利益,要实现这一使用的广泛效益,就需要患者的理解和支持。