Nøhr Christian, Parv Liisa, Kink Pille, Cummings Elizabeth, Almond Helen, Nørgaard Jens Rahbek, Turner Paul
Danish Centre for Health Informatics, Department of Development and Planning, Aalborg University, Vestre Havnepromenade 5, 9000, Aalborg, Denmark.
E-Health Laboratory, Tallinn University of Technology, Tallinn, Estonia.
BMC Health Serv Res. 2017 Aug 7;17(1):534. doi: 10.1186/s12913-017-2482-y.
Most countries face an ageing population, increasing chronic diseased, and constrictions on budget for providing health services. Involving patients in their own care by allowing them access to their patient data is a trend seen in many places.
Data on the type and level of access citizens have to their own health data in three countries was gathered from public sources.
Data from each individual country is presented and the experiences of Denmark, Estonia and Australia are examined whilst similarities and differences explored. The discussion adopts a citizen-centred perspective to consider how the different e-portal systems support, protect and structure citizen interactions with their own health data in three key areas: Security, privacy and data protection; User support; and Citizen adoption and use.
The paper highlights the impact of opt-in/opt-out approaches on citizen access and the lack of a structured approach to addressing differences in citizen health and e-health literacy. This research also confirms while current data provides detail on the availability and use of personal health data by citizens, questions still remain over the ultimate impact on patient outcomes of these initiatives. It is anticipated the insights generated from the three countries experiences, supporting citizen access to their health data will be useful to improve these initiatives and guide other countries aspiring to support similar initiatives.
大多数国家面临人口老龄化、慢性病增多以及卫生服务预算受限的问题。通过让患者能够获取自己的医疗数据，使其参与自身护理，这是在许多地方都能看到的一种趋势。
从公开来源收集了三个国家公民获取自身健康数据的类型和程度的数据。
展示了每个国家的数据，并审视了丹麦、爱沙尼亚和澳大利亚的经验，同时探讨了异同点。讨论从以公民为中心的视角出发，考量不同的电子门户系统如何在三个关键领域支持、保护并构建公民与自身健康数据的交互：安全、隐私和数据保护；用户支持；以及公民的采用和使用情况。
本文强调了选择加入/选择退出方式对公民获取数据的影响，以及缺乏一种结构化方法来应对公民健康和电子健康素养方面的差异。这项研究还证实，虽然当前数据详细说明了公民对个人健康数据的获取和使用情况，但这些举措对患者治疗结果的最终影响仍存在疑问。预计从这三个国家的经验中获得的见解，即支持公民获取其健康数据，将有助于改进这些举措，并指导其他有志于支持类似举措的国家。
