Patient access to complex chronic disease records on the Internet
Patient access to complex chronic disease records on the Internet
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DOI：
10.1186/1472-6947-12-87
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发表时间：
2012-08-06
影响因子：
3.5
通讯作者：
Turner, A. Neil
中科院分区：
文献类型：
--
作者：
Bartlett, Cherry;Simpson, Keith;Turner, A. Neil
背景：据报道，在互联网上获取医疗记录是可以接受的，并且受到患者的欢迎，尽管大多数发表的评估都是关于初级保健或基于办公室的实践。我们在一个涉及英国一半以上肾脏单位的项目中，测试了通过互联网向患者提供未经筛选的复杂慢性疾病途径（肾脏医学）的结果和数据的可行性和可接受性。方法：根据患者分组开发肾患者视图（Renal PatientView， RPV）系统的内容和呈现方式。它的设计目的是接收来自多个地方信息系统的信息，并且只需要很少的额外工作。2005年在4个中心试行后，该方案得到了更广泛的应用。通过纸质调查向入组患者和未入组患者征求意见，并通过电子调查向工作人员征求意见。注册和使用的匿名数据是从网络服务器中提取的。结果：到2011年中期，来自英国75个肾脏单位中的47个的17000多名患者已经注册。用户的年龄范围很广（90岁），但比非用户更年轻，受教育年限更长。他们对这个概念充满热情，发现它很容易使用，80%的人认为它能让他们更好地了解自己的疾病。不注册的最常见原因是不知道这个系统。少数患者有安全问题，这些问题在入组后减少了。工作人员的反应也非常积极。他们报告说，它有助于病人的协调和疾病管理，并提高了咨询的质量，对咨询时间的影响是中性的。患者和工作人员的反应都没有表明RPV导致患者焦虑的总体增加，或者增加了肾脏单位的负担，超出了登记每个患者所需的时间。结论：患者通过互联网获取有关复杂慢性疾病的二级医疗记录是可行和流行的，提供了一种增强的赋权和理解感，没有严重的负面后果。安全问题是存在的，但很少阻止参加。这些都是使这类访问更广泛可用的有力理由。
Background: Access to medical records on the Internet has been reported to be acceptable and popular with patients, although most published evaluations have been of primary care or office-based practice. We tested the feasibility and acceptability of making unscreened results and data from a complex chronic disease pathway (renal medicine) available to patients over the Internet in a project involving more than half of renal units in the UK.Methods: Content and presentation of the Renal PatientView (RPV) system was developed with patient groups. It was designed to receive information from multiple local information systems and to require minimal extra work in units. After piloting in 4 centres in 2005 it was made available more widely. Opinions were sought from both patients who enrolled and from those who did not in a paper survey, and from staff in an electronic survey. Anonymous data on enrolments and usage were extracted from the webserver.Results: By mid 2011 over 17,000 patients from 47 of the 75 renal units in the UK had registered. Users had a wide age range (90 yrs) but were younger and had more years of education than non-users. They were enthusiastic about the concept, found it easy to use, and 80% felt it gave them a better understanding of their disease. The most common reason for not enrolling was being unaware of the system. A minority of patients had security concerns, and these were reduced after enrolling.Staff responses were also strongly positive. They reported that it aided patient concordance and disease management, and increased the quality of consultations with a neutral effect on consultation length. Neither patient nor staff responses suggested that RPV led to an overall increase in patient anxiety or to an increased burden on renal units beyond the time required to enrol each patient.Conclusions: Patient Internet access to secondary care records concerning a complex chronic disease is feasible and popular, providing an increased sense of empowerment and understanding, with no serious identified negative consequences. Security concerns were present but rarely prevented participation. These are powerful reasons to make this type of access more widely available.