Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People's Health?

Department of Primary Health Care Sciences, University of Oxford, 23–38 Hythe Bridge Street, Oxford OX1 2ET, United
Milbank Quarterly (Impact Factor: 3.38). 06/2012; 90(2):219-49. DOI: 10.1111/j.1468-0009.2012.00662.x
Source: PubMed


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.

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    • "Delivering financial value from patients' online participation can adopt various forms depending on the organisation; methods include raising funds for non-profit organisations through promoting donations and volunteering, selling access to patient-generated data and advertising on popular sites, promoting for-sale products, and producing long-term savings for state healthcare systems by improving patient education and self-management. These financial agendas may be obscured from or ignored by Facebook users, who may nevertheless benefit from mutual sharing of knowledge with peers, increased social support, a greater understanding of their condition and, potentially, improved health (Ziebland and Wyke, 2012). "
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    ABSTRACT: Health communication published on Facebook has become a popular source of medical information and large organisations now utilise Facebook to disseminate multimodal representations of health and illness. Drawing on a sample of posts to two popular diabetes-related Facebook pages, this paper aims to examine the multimodal representation of people with diabetes and consider the implications of this emergent context of health communication. These posts draw upon visual and linguistic features of social intimacy to synthesise personal relationships with their audiences and to foster user involvement with their authoring organisations. The promissory vision of living well with diabetes that predominates on these pages is thus also designed to serve the agendas of organisations who are dependent on user participation to generate revenue.
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    • "Online health communities (OHCs) are becoming a central hub where patients and caregivers can learn and share health-related information and also gain emotional support during their health management process . An increasing number of people are joining OHCs [43] and health care organizations promote them as part of their patient-support services [30]. Studies showed OHCs play an important role in providing patients and caregivers with social support and improved health outcomes [9] [32]. "

    IEEE Transactions on Visualization and Computer Graphics 01/2015; DOI:10.1109/TVCG.2015.2467555 · 2.17 Impact Factor
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    • "Patient experiences can be used to inform health decisions [12], but they also offer opportunities for social comparison, helping patients understand how well they are coping with a particular illness [17]. Patients may draw on others " accounts of their experiences of disease in order to become more optimistic about their own condition [22] or to adjust to the reality of the disease in order to prepare them for what is to come, but in either case, others " experiences can seem to leave them feeling less isolated in their " patient journey " [30]. Not surprisingly, then, the latest Pew data on peer-to-peer health care shows that those living with chronic conditions are most likely to go online to find others with similar health concerns [11]. "
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    ABSTRACT: Patients now turn to other patients online for health information and advice in a phenomenon known as peer-to-peer healthcare. This paper describes a model of patients' peer-to-peer engagement, based upon qualitative studies of three patient or carer groups searching for online information and advice from their health peers. We describe a three-phase process through which patients engage with peer experience (PEx). In phase I (gating) patients determine the suitability and trustworthiness of the material they encounter; in phase II (engagement) they search out information, support and/or advice from others with similar or relevant experience; and in phase III (evaluation) they make judgments about the costs and benefits of engaging with particular websites in the longer term. This model provides a useful framework for understanding web based interactions in different patient groups.
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