Department of Biomedical Informatics, University of Utah, Salt Lake City, UT 84112, USA.
J Med Libr Assoc. 2011 Jan;99(1):70-6. doi: 10.3163/1536-5050.99.1.012.
The objectives of this study were to assess the reactions of adult patients and parents of children with metabolic conditions to receipt of an "information prescription" (IP) to visit Genetics Home Reference (GHR), a National Institutes of Health/National Library of Medicine online resource, and evaluate the perceived utility of information found on the site.
Patients seen at the University of Utah Metabolic Service Clinic were invited to participate in the study and asked to complete an initial survey to gather demographic data and an online survey six weeks later to obtain information about user experience.
Fifty-three of 82 individuals completed both surveys, for an overall response rate of 64.6%. Most respondents (88.7%) agreed that receiving the IP was a "good idea," and nearly all used the IP to visit GHR. More than three-quarters (79.6%) agreed that information on GHR supplemented a physician's advice; 60.4% reported an improved understanding of a health condition; and 41.5% either looked for or would consider looking for additional information. Eighty-six percent of respondents were satisfied with the information found on GHR, and 80% would recommend the site.
Use of an IP to direct patients to GHR was well received, and retrieved information was perceived as useful in key areas. The high level of satisfaction with GHR argues for expanded use of the IP approach in this patient population.
本研究旨在评估成年患者和代谢疾病患儿家长对接收“信息处方”（IP）以访问国家卫生研究院/国家医学图书馆在线资源遗传学家庭参考（GHR）的反应，并评估他们对该网站信息的实用性的看法。
在犹他大学代谢服务诊所就诊的患者被邀请参与研究，并要求他们完成初始调查以收集人口统计学数据，然后在六周后进行在线调查以获取有关用户体验的信息。
82 名参与者中有 53 名完成了两项调查，总体回复率为 64.6%。大多数受访者（88.7%）认为收到 IP 是“好主意”，几乎所有人都使用 IP 访问 GHR。超过四分之三（79.6%）的人同意 GHR 上的信息补充了医生的建议；60.4%的人表示对健康状况的理解有所提高；41.5%的人要么在寻找或会考虑寻找其他信息。86%的受访者对 GHR 上找到的信息感到满意，80%的人会推荐该网站。
使用 IP 指导患者访问 GHR 的方法受到好评，并且检索到的信息在关键领域被认为是有用的。对 GHR 的高度满意度表明，在该患者群体中应扩大使用 IP 方法。
