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Objectives To draw on narrative interviews with patients with lung cancer and to explore their perceptions and experience of stigma. Design Qualitative study. Setting United Kingdom. Participants 45 patients with lung cancer recruited through several sources.

ContextThe 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.MethodsWe 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.FindingsWe 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.ConclusionsThe 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.

Qualitative analysis of patients' perspectives of illness can illuminate numerous issues that are important for medical education, some of which are unlikely to arise in the clinical encounter. Qualitative studies can also cover a much broader range of experiences - of both common and rare disease - than clinicians will see in practice. The DIPEx website is based on qualitative analysis of collections of interviews, illustrated with hundreds of video and audio clips, and is an innovative resource for medical education.

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The NHS has been collecting data on patients’ experience of care for over 10 years but few providers are systematically using the information to improve services. Angela Coulter and colleagues argue that a national institute of “user” experience should be set up to draw the data together, determine how to interpret the results, and put them into practice

Objective To explore how men and women with cancer talk about using the internet.