Atkinson Nancy L, Massett Holly A, Mylks Christy, Hanna Bethany, Deering Mary Jo, Hesse Bradford W
Department of Public and Community Health, University of Maryland, College Park, MD 20742, USA.
J Med Internet Res. 2007 May 15;9(2):e13. doi: 10.2196/jmir.9.2.e13.
Internet-based clinical trial matching systems have the potential to streamline the search process for women with breast cancer seeking alternative treatments. A prototype system was developed to leverage the capabilities of a personal health record system for the purpose of identifying clinical trials.
This study examines how breast cancer patients perceive and interact with a preliminary version of an Internet-based clinical trial matching system, while taking into account the demands of diagnosis and treatment decision making.
Breast cancer patients participated in small group discussions and interacted with the prototype website in a two-phase qualitative research process. The first phase explored the experience of breast cancer patients (n = 8) with treatment decision making, initial responses to the idea of Internet-based clinical trial matching systems, and reactions to the prototype site. In the second phase, a different set of breast cancer patients (n = 7) reviewed revised website content and presentation and participated in a usability test in which they registered on the system and completed a personal health record to set up the matching process.
Participants were initially skeptical of the prototype system because it emphasized registration, had a complicated registration process, and asked for complex medical information. Changing content and attending to usability guidelines improved the experience for women in the second phase of the research and enabled the identification of functionality and content issues, such as lack of clear information and directions on how to use the system.
This study showed that women felt favorably about the idea of using the Internet to search for clinical trials but that such a system needed to meet their expectations for credibility and privacy and be sensitive to their situation. Developers can meet these expectations by conforming to established usability guidelines and testing improvements with breast cancer patients. Future research is needed to verify these findings and to continue to improve systems of this nature.
基于互联网的临床试验匹配系统有潜力简化乳腺癌女性寻找替代治疗方法的搜索过程。开发了一个原型系统，以利用个人健康记录系统的功能来识别临床试验。
本研究探讨乳腺癌患者如何看待基于互联网的临床试验匹配系统的初步版本并与之互动，同时考虑到诊断和治疗决策的需求。
乳腺癌患者参与了小组讨论，并在一个两阶段的定性研究过程中与原型网站进行互动。第一阶段探讨了乳腺癌患者（n = 8）的治疗决策经验、对基于互联网的临床试验匹配系统概念的初步反应以及对原型网站的反应。在第二阶段，另一组乳腺癌患者（n = 7）审查了修订后的网站内容和展示，并参与了一项可用性测试，在测试中他们在系统上注册并完成个人健康记录以启动匹配过程。
参与者最初对原型系统持怀疑态度，因为它强调注册，注册过程复杂，且要求提供复杂的医疗信息。更改内容并遵循可用性指南改善了研究第二阶段女性的体验，并发现了功能和内容问题，例如缺乏关于如何使用该系统的明确信息和指导。
本研究表明，女性对使用互联网搜索临床试验的想法持积极态度，但这样的系统需要满足她们对可信度和隐私的期望，并对她们的情况保持敏感。开发者可以通过遵循既定的可用性指南并与乳腺癌患者一起测试改进措施来满足这些期望。需要进一步的研究来验证这些发现并继续改进这类系统。
