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The importance of being expert: the quest for cancer information on the Internet

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  • Ziebland, Sue

Abstract

To people with the necessary technology the internet can provide vast amounts of health information. However, there are concerns about the quality of the information and how it may affect relationships between patients and doctors. Little empirical research has examined how the internet is used by those diagnosed with a serious illness. This study uses in-depth interviews collected for DIPEx projects with men and women with cancer. The analysis is informed by Radley and Billig's (Sociol. Health Illness 2 (1996) 220) observation that accounts of illness require patients to simultaneously display themselves as 'worthy individuals, as more or less fit participants in the social world' and on Arthur Frank's work on quest narratives. Drawing on in-depth interviews with a woman with inflammatory breast cancer and a man with prostate cancer I will demonstrate how the internet has been used not only to gather information and gain support from others but also to make sense of the experience of cancer. The ability to access health information on the internet may provide patients with an opportunity to display a particularly modern marker of competence and social fitness. However, one of the consequences of easier access to health information may be the emergence of a felt imperative to be (or present oneself as) an expert and critical patient, able to question advice and locate effective treatments for oneself.

Suggested Citation

  • Ziebland, Sue, 2004. "The importance of being expert: the quest for cancer information on the Internet," Social Science & Medicine, Elsevier, vol. 59(9), pages 1783-1793, November.
  • Handle: RePEc:eee:socmed:v:59:y:2004:i:9:p:1783-1793
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    1. Sissel Andreassen & Ingrid Randers & Erik Näslund & Dag Stockeld & Anne‐Cathrine Mattiasson, 2006. "Patients’ experiences of living with oesophageal cancer," Journal of Clinical Nursing, John Wiley & Sons, vol. 15(6), pages 685-695, June.
    2. Mackintosh, Nicola & Gong, Qian (Sarah) & Hadjiconstantinou, Michelle & Verdezoto, Nervo, 2021. "Digital mediation of candidacy in maternity care: Managing boundaries between physiology and pathology," Social Science & Medicine, Elsevier, vol. 285(C).
    3. Balta, Maria & Valsecchi, Raffaella & Papadopoulos, Thanos & Bourne, Dorota Joanna, 2021. "Digitalization and co-creation of healthcare value: A case study in Occupational Health," Technological Forecasting and Social Change, Elsevier, vol. 168(C).
    4. Lemire, Marc & Sicotte, Claude & Paré, Guy, 2008. "Internet use and the logics of personal empowerment in health," Health Policy, Elsevier, vol. 88(1), pages 130-140, October.
    5. Richard Green, 2021. "The Forms and Uses of Acquired Prostate Cancer Expertise Among Prostate Cancer Survivors," Sociological Research Online, , vol. 26(1), pages 60-74, March.
    6. Webster, Michelle, 2017. "Similarities and differences in the meanings children and their parents attach to epilepsy medications," Social Science & Medicine, Elsevier, vol. 177(C), pages 190-197.
    7. Kjærulff, Emilie Mølholm & Langstrup, Henriette, 2023. "From ‘parallel world’ to ‘trading zone’: How diabetes-related information from social media is (not) discussed in clinical consultations," Social Science & Medicine, Elsevier, vol. 320(C).
    8. Collette Sosnowy, 2014. "Practicing Patienthood Online: Social Media, Chronic Illness, and Lay Expertise," Societies, MDPI, vol. 4(2), pages 1-14, June.
    9. Petersen, Alan & Schermuly, Allegra & Anderson, Alison, 2022. "‘A platform for goodness, not for badness’: The heuristics of hope in patients' evaluations of online health information," Social Science & Medicine, Elsevier, vol. 306(C).
    10. Sophia Alice Johnson, 2014. "“Maternal Devices”, Social Media and the Self-Management of Pregnancy, Mothering and Child Health," Societies, MDPI, vol. 4(2), pages 1-21, June.
    11. El Enany, Nellie & Currie, Graeme & Lockett, Andy, 2013. "A paradox in healthcare service development: Professionalization of service users," Social Science & Medicine, Elsevier, vol. 80(C), pages 24-30.
    12. Foster, Drew, 2016. "‘Keep complaining til someone listens’: Exchanges of tacit healthcare knowledge in online illness communities," Social Science & Medicine, Elsevier, vol. 166(C), pages 25-32.
    13. Locock, Louise & Nettleton, Sarah & Kirkpatrick, Susan & Ryan, Sara & Ziebland, Sue, 2016. "‘I knew before I was told’: Breaches, cues and clues in the diagnostic assemblage," Social Science & Medicine, Elsevier, vol. 154(C), pages 85-92.
    14. Stevenson, Fiona A. & Seguin, Maureen & Leydon-Hudson, Geraldine & Barnes, Rebecca & Ziebland, Sue & Pope, Catherine & Murray, Elizabeth & Atherton, Helen, 2021. "Combining patient talk about internet use during primary care consultations with retrospective accounts. A qualitative analysis of interactional and interview data," Social Science & Medicine, Elsevier, vol. 272(C).
    15. Sinding, Christina & Hudak, Pamela & Wiernikowski, Jennifer & Aronson, Jane & Miller, Pat & Gould, Judy & Fitzpatrick-Lewis, Donna, 2010. ""I like to be an informed person but..." negotiating responsibility for treatment decisions in cancer care," Social Science & Medicine, Elsevier, vol. 71(6), pages 1094-1101, September.
    16. Dedding, Christine & van Doorn, Roesja & Winkler, Lex & Reis, Ria, 2011. "How will e-health affect patient participation in the clinic? A review of e-health studies and the current evidence for changes in the relationship between medical professionals and patients," Social Science & Medicine, Elsevier, vol. 72(1), pages 49-53, January.
    17. Tian, Xiaoli & Zhang, Sai, 2022. "Expert or experiential knowledge? How knowledge informs situated action in childcare practices," Social Science & Medicine, Elsevier, vol. 307(C).
    18. Stacey, Clare Louise & Henderson, Stuart & MacArthur, Kelly R. & Dohan, Daniel, 2009. "Demanding patient or demanding encounter?: A case study of a cancer clinic," Social Science & Medicine, Elsevier, vol. 69(5), pages 729-737, September.
    19. Salant, Talya & Santry, Heena P., 2006. "Internet marketing of bariatric surgery: Contemporary trends in the medicalization of obesity," Social Science & Medicine, Elsevier, vol. 62(10), pages 2445-2457, May.
    20. Shachar, Leeor, 2022. "“You become a slightly better doctor”: Doctors adopting integrated medical expertise through interactions with E-patients," Social Science & Medicine, Elsevier, vol. 305(C).
    21. Beudaert, Anthony & Özçağlar-Toulouse, Nil & Türe, Meltem, 2016. "Becoming sensory disabled: Exploring self-transformation through rites of passage," Journal of Business Research, Elsevier, vol. 69(1), pages 57-64.

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