Department of Primary Health Care Sciences, University of Oxford, 23–38 Hythe Bridge Street, Oxford OX1 2ET, United
Milbank Q. 2012 Jun;90(2):219-49. doi: 10.1111/j.1468-0009.2012.00662.x.
The use of the Internet for peer-to-peer connection has been one of its most dramatic and transformational features. Yet this is a new field with no agreement on a theoretical and methodological basis. The scientific base underpinning this activity needs strengthening, especially given the explosion of web resources that feature experiences posted by patients themselves. This review informs a National Institute for Health Research (NIHR) (UK) research program on the impact of online patients' accounts of their experiences with health and health care, which includes the development and validation of a new e-health impact questionnaire.
We drew on realist review methods to conduct a conceptual review of literature in the social and health sciences. We developed a matrix to summarize the results, which we then distilled from a wide and diverse reading of the literature. We continued reading until we reached data saturation and then further refined the results after testing them with expert colleagues and a public user panel.
We identified seven domains through which online patients' experiences could affect health. Each has the potential for positive and negative impacts. Five of the identified domains (finding information, feeling supported, maintaining relationships with others, affecting behavior, and experiencing health services) are relatively well rehearsed, while two (learning to tell the story and visualizing disease) are less acknowledged but important features of online resources.
The value of first-person accounts, the appeal and memorability of stories, and the need to make contact with peers all strongly suggest that reading and hearing others' accounts of their own experiences of health and illnesss will remain a key feature of e-health. The act of participating in the creation of health information (e.g., through blogging and contributing to social networking on health topics) also influences patients' experiences and has implications for our understanding of their role in their own health care management and information.
互联网的点对点连接的使用是其最显著和最具变革性的特征之一。然而，这是一个新的领域，在理论和方法基础上没有达成一致。支持这项活动的科学基础需要加强，尤其是考虑到具有患者自身经历的网络资源的爆炸式增长。这一综述为英国国家卫生研究院（NIHR）的一项关于在线患者对健康和医疗体验的描述对其自身健康的影响的研究计划提供了信息，其中包括开发和验证一个新的电子健康影响问卷。
我们借鉴了现实主义综述方法，对社会科学和健康科学的文献进行了概念性综述。我们制定了一个矩阵来总结结果，然后从广泛而多样化的文献阅读中进行了提炼。我们继续阅读，直到达到数据饱和，然后在与专家同事和公众用户小组进行测试后进一步完善结果。
我们通过在线患者的体验可以影响健康的七个领域进行了识别。每个领域都有可能产生积极和消极的影响。已识别的五个领域（寻找信息、获得支持、与他人保持关系、影响行为和体验医疗服务）已经得到了充分的认识，而另外两个领域（学习讲述故事和想象疾病）虽然不太被承认，但却是在线资源的重要特征。
第一人称叙述的价值、故事的吸引力和可记忆性，以及与同龄人接触的需求，都强烈表明，阅读和听取他人对自己健康和疾病经历的描述将仍然是电子健康的一个关键特征。参与创建健康信息的行为（例如，通过写博客和参与健康主题的社交网络）也会影响患者的体验，并对我们理解他们在自身医疗保健管理和信息中的角色产生影响。
