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本文引用的文献

1
Varicose veins: a qualitative study to explore expectations and reasons for seeking treatment.静脉曲张:一项探索治疗期望与寻求治疗原因的定性研究
J Clin Nurs. 2004 Mar;13(3):332-40. doi: 10.1046/j.1365-2702.2003.00840.x.
2
Evaluation of web accessibility of consumer health information websites.消费者健康信息网站的网络可及性评估。
AMIA Annu Symp Proc. 2003;2003:743-7.
3
Identifying information needs of people with multiple sclerosis.确定多发性硬化症患者的信息需求。
Nurs Times. 2003;99(49):32-6.
4
Telemedicine and the delivery of health services to veterans with multiple sclerosis.远程医疗与为多发性硬化症退伍军人提供医疗服务
J Rehabil Res Dev. 2003 May-Jun;40(3):265-82.
5
Users of Internet health information: differences by health status.互联网健康信息的使用者:按健康状况划分的差异
J Med Internet Res. 2002 Apr-Nov;4(2):E7. doi: 10.2196/jmir.4.2.e7.
6
South Asian women, psychological distress and self-harm: lessons for primary care trusts.南亚女性、心理困扰与自我伤害:初级保健信托机构的经验教训
Health Soc Care Community. 2002 Sep;10(5):339-47. doi: 10.1046/j.1365-2524.2002.00382.x.
7
How do consumers search for and appraise health information on the world wide web? Qualitative study using focus groups, usability tests, and in-depth interviews.消费者如何在万维网上搜索和评估健康信息?采用焦点小组、可用性测试和深度访谈的定性研究。
BMJ. 2002 Mar 9;324(7337):573-7. doi: 10.1136/bmj.324.7337.573.
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Creating senior-friendly Web sites.创建适合老年人的网站。
Issue Brief Cent Medicare Educ. 2000;1(4):1-8.
9
Multiple sclerosis.多发性硬化症
N Engl J Med. 2000 Sep 28;343(13):938-52. doi: 10.1056/NEJM200009283431307.
10
Sense making in multiple sclerosis: the information needs of people during an acute exacerbation.
Qual Health Res. 1998 Jan;8(1):106-20. doi: 10.1177/104973239800800108.

一刀切并不适用于所有情况:运用定性方法为多发性硬化症患者开发互联网门户网站提供依据。

One size does not fit all: using qualitative methods to inform the development of an Internet portal for multiple sclerosis patients.

作者信息

Atreja Ashish, Mehta Neil, Miller Deborah, Moore Shirley, Nichols Karen, Miller Holly, Harris C Martin

机构信息

Cleveland Clinic Foundation, OH, USA.

出版信息

AMIA Annu Symp Proc. 2005;2005:16-20.

PMID:16778993
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC1560589/
Abstract

Disabled and elderly populations are the fastest growing segment of Internet usage. However,these people face an "Inverse Information law"-access to appropriate information is particularly difficult to those who need it the most. Our tertiary care Multiple Sclerosis (MS) center received funding to develop a MS specific patient portal linked to web messaging system so as to empower patients to become more active participants in their health care. In order to design an effective portal, we conducted a qualitative study using focus groups and direct observation techniques. The study explores the perceptions, expectations and interactions of MS patients with the portal and underscores the many challenges MS patients face in getting quality health information on the Internet. Many of the patient barriers were due to inappropriate font sizes, low contrast, cluttering of web page and use of dynamic and flashing objects. Some of these issues are not addressed by Section 508 accessibility guidelines. We believe that any future patient portal or health information website needs to address these issues and educate the patients about accessibility options to enhance utilization and user satisfaction.

摘要

残疾人群体和老年人群体是互联网使用增长最快的群体。然而,这些人面临着一条“反向信息法则”——对于最需要信息的人来说,获取适当的信息尤为困难。我们的三级医疗多发性硬化症(MS)中心获得了资金,用于开发一个与网络消息系统相连的特定于MS的患者门户,以使患者能够更积极地参与自身的医疗保健。为了设计一个有效的门户,我们使用焦点小组和直接观察技术进行了一项定性研究。该研究探讨了MS患者对门户的认知、期望和互动,并强调了MS患者在互联网上获取高质量健康信息时面临的诸多挑战。许多患者面临的障碍是由于字体大小不合适、对比度低、网页杂乱以及使用动态和闪烁的对象。第508条无障碍指南并未解决其中一些问题。我们认为,未来的任何患者门户或健康信息网站都需要解决这些问题,并向患者宣传无障碍选项,以提高利用率和用户满意度。