Elizabeth Sillence
ABSTRACT
Shared patient experience (PEx) has become common on the medical Internet and is a potentially valuable source of health information and advice, but little is known about how we choose to incorporate PEx in our information gathering and health decision-making. An online questionnaire revealed a paradox: patients like PEx and are drawn to sites containing PEx, but are then less likely to trust the information and advice they find there. Subsequent analysis suggests that this paradox may be related to the prevalence of advertising as a funding-model for online patient communities. To better understand these issues we explored one health domain (smoking cessation) in greater depth, inviting participants to search for relevant material and then discuss the different kinds of patient experience they found online. We report on the selection and rejection factors involved in choosing sites containing PEx and explore the notion of credible design in this space.
- Fox, S. The social life of health information. Pew Internet and American Life, (2011), http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Infor-Summary-of-Findings.aspxGoogle Scholar
- Mo, P. K. H. and Coulson, N. S. Exploring the communication of social support within virtual communities: A content analysis of messages posted to an online HIV/AIDS support group. CyberPsychology & Behavior 11, (2008), 371--374.Google ScholarCross Ref
- Brann, M. and Anderson, J. G. E-Medicine and health care consumers: Recognizing current problems and possible resolutions for a safer environment. Health Care Analysis 10, (2002), 403--415.Google ScholarCross Ref
- Christensen, H. and Griffiths, K. The internet and mental health practice. Evidence-Based Mental Health 6, (2003), 66--69.Google ScholarCross Ref
- Laurent, M. and Vickers, T. J. Seeking health information online: Does Wikipedia matter? Journal of the American Medical Informatics Association 16, (2009), 471--479.Google ScholarCross Ref
- Anderson, J. G., Rainey, M. R., and Eysenbach, G. The impact of CyberHealthcare on the physician-patient relationship. Journal of Medical Systems 27, (2003), 67--84. Google ScholarDigital Library
- Berland, G. K., Elliott, M. N., Morales, L. S., Algazy, J. I., Kravitz, R. L., Broder, M. S., et al. Health information on the Internet: Accessibility, quality, and readability in English and Spanish. Journal of the American Medical Association 23, (2001), 2612--2621.Google ScholarCross Ref
- Fox, S. and Rainie, L. Vital decisions: How Internet users decide what information to trust when they or their loved ones are sick. Washington, DC: Pew Internet & American Life Project, 2002.Google Scholar
- Friedewald, V. E. Jr. The Internet's influence on the doctor-patient relationship. Health Management Technology 21, 11 (2000), 79--80.Google Scholar
- Pemberton, P. J. and Goldblatt, J. The Internet and the changing roles of doctors, patients and families. Medical Journal of Australia 169, (1998), 594--595.Google ScholarCross Ref
- Eysenbach, G. The impact of the Internet on cancer outcomes. CA: A Cancer Journal for Clinicians 53, (2003), 356--371.Google ScholarCross Ref
- Frost, J. Social uses of personal health information within PatientsLikeMe, an online patient community: What can happen when patients have access to one another's data. Journal of Medical Internet Research 10, (2008), e15.Google ScholarCross Ref
- Ziebland, S., Chapple, A., Dumelow, C., Evans, J., Prinjha, S. and Rozmovits, L. How the internet affects patients' experience of cancer: A qualitative study. British Medical Journal 328, 7439, (2004), 564.Google ScholarCross Ref
- Caron-Flinterman, J. F., Broerse, J. E. W. and Bunders, J. F. G. The experiential knowledge of patients: A new resource for biomedical research? Social Science & Medicine 60, (2005), 2575--2584.Google ScholarCross Ref
- Entwistle, V. A., Renfrew, M. J., Yearley, S., Forrester, J. and Lamont, T. Lay perspectives: Advantages for health research. British Medical Journal 316, 7129, (1998), 463--466.Google ScholarCross Ref
- France, E. F., Wyke, S., Ziebland, S.; Entwistle, V. A. and Hunt, K. How personal experiences feature in women's accounts of use of information for decisions about antenatal diagnostic testing for foetal abnormality. Social Science & Medicine 72, (2011), 755--762.Google ScholarCross Ref
- Entwistle, V. A., France, E. F., Wyke, S., Jepson, R., Hunt, K., Ziebland, S. and Thompson, A. How information about other people's personal experiences can help with healthcare decision-making: A qualitative study. Patient Education and Counseling 85, (2011), 291--298.Google ScholarCross Ref
- Wicks, P., Massagli, M., Frost, J., Brownstein, C., Okun, S., Vaughan, T., et al. Sharing health data for better outcomes on PatientsLikeMe. Journal of Medical Internet Research 12, 2 (2010), e19.Google ScholarCross Ref
- Ziebland, S. and Wyke, S. Health and illness in a connected world: How might sharing experiences on the Internet affect people's health? Millbank Quarterly 90, 2 (2012), 219--249.Google ScholarCross Ref
- Hinton, L., Kurinczuk, J. J., and Ziebland, S. Infertility; isolation and the Internet: A qualitative interview study. Patient Education and Counseling 81, (2010), 436--41.Google ScholarCross Ref
- Sillence, E.; Briggs, P.; Harris, P. and Fishwick, L. Going online for health advice: Changes in usage and trust practices over the last five years. Interacting with Computers 19, (2007), 397--406. Google ScholarDigital Library
- Kamal, N., Fels, S. and Ho, K. Online social networks for personal informatics to promote positive health behavior. In Proc. of the 2nd ACM SIGMM Workshop on Social Media (Firenze, Italy), (2010), 47--52. Google ScholarDigital Library
- Powell J. and Clarke, A. Information in mental health: qualitative study of mental health service users. Health Expectations 9, (2006), 359--365.Google ScholarCross Ref
- Powell J., and Clarke, A. Internet information seeking in mental health: population survey. British Journal of Psychiatry 189, (2006), 273--277.Google ScholarCross Ref
- Briggs, P., Burford, B., De Angeli, A. and Lynch, P. Trust in online advice. Social Science Computer Review 20, 3 (2002), 321--332. Google ScholarDigital Library
- Harris, P. R., Sillence, E. and Briggs, P. Perceived threat and corroboration: Key factors that improve a predictive model of trust in Internet-based health information and advice. Journal of Medical Internet Research 13, 3 (2011), e51.Google ScholarCross Ref
- Sillence, E. Briggs, P. Harris, P. & Fishwick, L. Changes in online health usage over the last 5 years. Ex Abstracts CHI 2006 ACM Press (2006). Google ScholarDigital Library
- Sillence, E., Briggs, P., Fishwick, L. and Harris, P. Trust and mistrust of online health Sites. Ex Abstracts CHI 2004 ACM Press (2004). Google ScholarDigital Library
- Harris, P. R., Sillence, E. and Briggs, P. The effect of trust-related design cues on responses to a web-based message about the breast cancer risks from alcohol. Journal of Medical Internet Research 11, 3 (2009), e37.Google ScholarCross Ref
- Braun, V. & Clarke, V. Using thematic analysis in psychology. Qualitative Research in Psychology 3, 2 (2006), 77--101.Google ScholarCross Ref
- Wangberg, S. C., Nilsen, O., Antypas, K., and Gram, I. T. Effect of tailoring in an Internet-based intervention for smoking cessation: Randomized controlled trial. Journal of Medical Internet Research 13, (2011), e121.Google ScholarCross Ref
- van Genugten, L., van Empelen, P., Boon, B., Borsboom, G., Visscher, T. and Oenema, A. Results from an online computer-tailored weight management intervention for overweight adults: Randomized controlled trial. Journal of Medical Internet Research 14, (2012), e44.Google ScholarCross Ref
- Peels, D. A., van Stralen, M. M., Bolman, C., Golsteijn, R. H. J., de Vries, H., Mudde, A. N. and Lechner, L. Development of web-based computer-tailored advice to promote physical activity among people older than 50 years. Journal of Medical Internet Research 14, (2012), e39.Google ScholarCross Ref
- Cobb, N. K., Graham, A. L., Byron, M. J., Niaura, R. S. and Abrams, D. B. Online social networks and smoking cessation: A scientific research agenda. Journal of Medical Internet Research 13, (2011), e119.Google ScholarCross Ref
- Department of Health. Equity and excellence: Liberating the NHS (White Paper-Cm7781) (2010).Google Scholar
Index Terms
- Why don't we trust health websites that help us help each other?: an analysis of online peer-to-peer healthcare
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