Advertisement

Untangling the Web of e-Health: Multiple Sclerosis Patients’ Perceptions of Online Health Information, Information Literacy, and the Impact on Treatment Decision Making

  • Anna L. Langhorne
  • Patrick Thomas
  • Laura Kolaczkowski
Part of the Lecture Notes in Computer Science book series (LNCS, volume 8029)

Abstract

Social media have changed how patients, caregivers and physicians produce, manage and use information when making medical treatment decisions. Because Multiple Sclerosis (MS) patients rely on online information to self-educate about treatment options, it is important to determine whether online decision-making tools are reliable and useful given patients’ knowledge of their disease and varying information literacy skills. Therefore, this study investigates the online search practices, perceptions, and usability of web-based information among MS patients. Perceptions of MS patients are measured by a questionnaire administered to a convenience sample of MS patients. Their online search practices are evaluated to determine the kind of information sought and used. Second, online search behaviors and needs are examined for trends related to MS disease type, stage and severity. Third, the relationship between online search behaviors and perceived impact on patient-neurologist communication is examined. Recommendations are offered for improved patient-neurologist communication and the development of inclusive treatment decision-making tools.

Keywords

Information seeking decision making information usability information literacy web navigation Web 2.0 Multiple Sclerosis patient communication 

References

  1. 1.
    Harland, J., Bath, P.: Assessing the Quality of Websites Providing Information on Multiple Sclerosis: Evaluating Tools and Comparing Sites. Health Informatics J. 13(1), 207–221 (2007)CrossRefGoogle Scholar
  2. 2.
    Hughes, B., Joshi, I., Wareham, J.: Health 2.0 and Medicine 2.0: Tensions and Controversies in the Field. J. Med. Internet Res. 10(3), 3:22 (2008)Google Scholar
  3. 3.
    Henwood, F., Wyatt, S., Hart, A., Smith, J.: ‘Ignorance is Bliss Sometimes’: Constraints on the Emergence of the ‘Informed Patient’ in the Changing Landscapes of Health Information. Soc. of Health & Illness 25(6), 589–607 (2003)CrossRefGoogle Scholar
  4. 4.
  5. 5.
    Schäffler, N., Köpke, S., Winkler, L., Schippling, S., Inglese, M., Fischer, K., Heesen, C.: Accuracy of Diagnostic Tests in Multiple Sclerosis – A Systematic Review. Acta Neurol. Scand. 124(3), 151–164 (2011)CrossRefGoogle Scholar
  6. 6.
    Frischer, J.A., Bramow, S., Dal-Bianco, A., Lucchinetti, C., Rauschka, H., Schmidbauer, M., Laursen, H., Soelberg Sorensen, P., Lassmann, H.: The Relation Between Inflammation and Neurodegeneration in Multiple Sclerosis Brains. Brain 132(5), 1175–1189 (2009)CrossRefGoogle Scholar
  7. 7.
    Stewart, D., Sullivan, T.: Illness Behavior and the Sick Role in Chronic Disease: The Case of Multiple Sclerosis. Soc. Sci. Med. 16(15), 1397–1404 (1982)CrossRefGoogle Scholar
  8. 8.
    Baker, L., Conner, J.: Physician-Patient Communication from the Perspective of Library and Information Science. Bull. Med. Libr. Assoc. 82(1), 36–42 (1994)Google Scholar
  9. 9.
    Houston, K.T., Allison, J.J.: Users of Internet Health Information: Differences by Health Status. J. Med. Internet Res. 4(2), e7 (2002)Google Scholar
  10. 10.
    Rice, R.: Influences, Usage, and Outcomes of Internet Health Information Searching: Multivariate Results from the Pew Surveys. Int. J. Med. Inform. 75(1), 8–28 (2006)MathSciNetCrossRefGoogle Scholar
  11. 11.
    Hay, M.C., Strathmann, C., Lieber, E., Wick, K., Glesser, B.: Why Patients Go Online: Multiple Sclerosis, the Internet, and Physician-Patient Communication. Neurologist 14(6), 374–381 (2008)CrossRefGoogle Scholar
  12. 12.
    Berland, G.K., Elliot, M.N., Morales, L., Algazy, J.I., Kravitz, R.L., Broder, M.S., Kanouse, D.E., Muñoz, J.A., Puyol, J.-A., Lara, M., Watkins, K.E., Yang, H., McGlynn, E.A.: Health Information on the Internet: Accessibility, Quality, and Readability in English and Spanish. J. Amer. Med. Assoc. 285(20), 2612–2621 (2001)CrossRefGoogle Scholar
  13. 13.
    Eastin, M.: Credibility Assessments of Online Health Information: The Effects of Source Expertise and Knowledge of Content. J. of Comp. Mediated Comm. 6(4) (2001) Google Scholar
  14. 14.
    Diaz, J.A., Griffith, R.A., Ng, J.J., Reinert, S.E., Friedmann, P.D., Moulton, A.W.: Patients’ Use of the Internet for Medical Information. J. Gen. Intern. Med. 17(3), 180–185 (2002)CrossRefGoogle Scholar
  15. 15.
    Birru, M.S., Monaco, V.M., Charles, L., Drew, H., Njie, V., Bierria, T., Detlefsen, E., Steinman, R.E.: Internet Usage by Low-Literacy Adults Seeking Health Information: An Observational Analysis. J. Med. Internet Res. 6(3), e25 (2004)Google Scholar
  16. 16.
    Paasche-Orlow, M.K., Taylor, H.A., Brancati, F.L.: Readability Standards for Informed-Consent Forms as Compared with Actual Readability. N. Eng. J. Med. 348(8), 721–726 (2003)CrossRefGoogle Scholar
  17. 17.
    Kim, S.P., Knight, S.J., Tomori, C., Colella, K.M., Schoor, R.A., Shih, L., Kuzel, T.M., Nadier, R.B., Bennett, C.L.: Health Literacy and Shared Decision Making for Prostate Cancer Patients with Low Socioeconomic Status. Cancer Invest. 19(7), 684–691 (2001)CrossRefGoogle Scholar
  18. 18.
    Street, B.: Literacy in Theory and Practice. Cambridge University Press, Cambridge (1984)Google Scholar
  19. 19.
    Barton, D., Hamilton, M.: Literacy Practices. In: Barton, D., Hamilton, M., Ivanič, R. (eds.) Situated Literacies, pp. 7–15. Routledge, London (2000)Google Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  • Anna L. Langhorne
    • 1
  • Patrick Thomas
    • 2
  • Laura Kolaczkowski
    • 2
  1. 1.Department of CommunicationUniversity of DaytonDaytonUSA
  2. 2.Department of EnglishUniversity of DaytonDaytonUSA

Personalised recommendations