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.
Chapter PDF
Similar content being viewed by others
Keywords
References
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)
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)
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)
National Multiple Sclerosis Society, http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/who-gets-ms/epidemiology-of-ms/index.aspx
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)
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)
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)
Baker, L., Conner, J.: Physician-Patient Communication from the Perspective of Library and Information Science. Bull. Med. Libr. Assoc. 82(1), 36–42 (1994)
Houston, K.T., Allison, J.J.: Users of Internet Health Information: Differences by Health Status. J. Med. Internet Res. 4(2), e7 (2002)
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)
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)
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)
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)
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)
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)
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)
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)
Street, B.: Literacy in Theory and Practice. Cambridge University Press, Cambridge (1984)
Barton, D., Hamilton, M.: Literacy Practices. In: Barton, D., Hamilton, M., Ivanič, R. (eds.) Situated Literacies, pp. 7–15. Routledge, London (2000)
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2013 Springer-Verlag Berlin Heidelberg
About this paper
Cite this paper
Langhorne, A.L., Thomas, P., Kolaczkowski, L. (2013). Untangling the Web of e-Health: Multiple Sclerosis Patients’ Perceptions of Online Health Information, Information Literacy, and the Impact on Treatment Decision Making. In: Ozok, A.A., Zaphiris, P. (eds) Online Communities and Social Computing. OCSC 2013. Lecture Notes in Computer Science, vol 8029. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-39371-6_35
Download citation
DOI: https://doi.org/10.1007/978-3-642-39371-6_35
Publisher Name: Springer, Berlin, Heidelberg
Print ISBN: 978-3-642-39370-9
Online ISBN: 978-3-642-39371-6
eBook Packages: Computer ScienceComputer Science (R0)