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.

Download full-text


Available from: Sally Wyke
  • Source
    • "Prior studies of health information online have shown that it is of variable quality5678910. Although much concern has been expressed over this1112131415, few examples of actual rather than potential harm have been documented[16,17]. Internet users often seek disease-specific information[18,19], including information that will enable them to diagnose a particular health problem[20]. "

    Full-text · Article · Jan 2016 · Journal of Medical Internet Research
  • Source
    • "Online support groups for long term conditions can help people normalise negative emotions such as depression and boost positive emotions like hope, self-efficacy, and motivation. Additionally, sharing personal stories on line has been found to relieve social isolation, provide information in a meaningful way, and increase coping ability [24]. Computerised Cognitive Behavioural Therapy (CCBT) has also been found to reduce anxiety and depression [25]. "
    [Show abstract] [Hide abstract]
    ABSTRACT: This mixed-method study assessed the impact of an internet-based, self-management intervention (“HeLP-Diabetes”) on the psychological well-being of adults with type 2 diabetes. Nineteen participants were recruited from 3 general practices. Data were collected at baseline and at 6 weeks follow-up. Access to HeLP-Diabetes was associated with a significant decrease in participants’ diabetes-related distress ( Z = 2.04 , p = 0.04 , and d = 0.28 ). No significant differences were found in emotional distress or self-efficacy. The qualitative data found that participants reported improvements including increased self-efficacy and support, better management of low mood, greater diabetes awareness, and taking the condition more seriously. Participants also reported making improvements to their eating habits, exercise routine, and medical management. Some negative experiences associated with using the intervention were mentioned including feelings of guilt for not using the intervention as suggested or not making any behavioral changes, as well as technical and navigational frustrations with the intervention. Internet-based self-management interventions may have the potential to decrease diabetes-related distress in people with type 2 diabetes. The qualitative data also suggests internet interventions can positively impact both psychological and behavioural outcomes of adults with type 2 diabetes.
    Full-text · Article · Jan 2016 · Journal of Diabetes Research
    • "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). "
    [Show abstract] [Hide abstract]
    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.
    No preview · Article · Jul 2015 · Language & Communication
Show more