Why Patients Go Online: Multiple Sclerosis, the Internet, and Physician-Patient Communication
Abstract
BACKGROUND: The online information seeking of multiple sclerosis (MS) patients, their reasons for doing so, and its importance for physician-patient communication have not been described. METHODS: Patients (n = 61) presenting for the first time at an MS clinic from December 2003 to July 2005 were interviewed pre- and postappointment and administered standard measures of pain and health quality of life. Consultations were audio recorded. Quantitative data were analyzed in light of qualitative data. RESULTS: Eighty-two percent of patients reported gathering medical information online before their first appointment; 36% discussed this information with their physician. Qualitative reasons for Internet information seeking and for not communicating it show some signs of wariness of health care potentially leading to nonadherence. CONCLUSIONS: Most MS patients are informed by online information, but are unlikely to discuss that research with physicians for reasons that may have implications for patient adherence.
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Most patients viewed their research as a complementary information source to be used alongside treatment from their HCP.
“However, most patients viewed their research as a complementary information source to be used alongside treatment from their HCP [30, 36, 47, 49, 50].”
Such patients were concerned about HCPs' reactions to their health research online and felt that they might not be listened to or that professionals might become dismissive or uninterested.
“such patients were concerned about HCP’s reactions to their health research online and felt that they might not be listened to or that the professionals might become dismissive or uninterested [27, 32, 36, 39].”
Many patients did not use the internet to replace HCPs but rather to gain a deeper understanding of their symptoms or disease and to become more familiar with the appropriate terminology.
“However, many patients did not use the internet to replace HCP’s but rather to gain a deeper understanding of their symptoms or disease and to become more familiar with the appropriate terminology [36].”
Hay et al. reported that 20% of participants went online to self-diagnose as they did not trust the diagnoses or treatment advice offered by their HCPs.
“However, Hay et al. (2008), reported that 20% of participants went online to self-diagnose as they did not trust the diagnoses or treatment advice offered by their HCP’s [36].”
One study in this review focused solely on multiple sclerosis patients.
“One study in this review focused solely on multiple sclerosis patients [36].”
A large proportion of people found health information obtained online to be a complementary information source, an adjunct rather than substitute for HCP advice and treatment.
“A large proportion of people found health information obtained online to be a complementary information source, that was an adjunct rather than substitute for HCP advice and treatment [30, 36, 47, 49, 50].”
Patients found HCPs to be the most valued source of health information but found the internet to be a useful complementary tool.
“Patients found HCP’s to be the most valued source of health information but found the internet to be a useful complementary tool [30, 36, 47, 49, 50].”
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- Authors
- Hay, M. C., Strathmann, C., Lieber, E., Wick, K., & Giesser, B.
- Affiliations
- University of California, Los Angeles (US)
- University of Southern California (US)
- Boston College (US)
- Corresponding author
- Hay, M Cameron
- ORCID
- Hay, M Cameron
- Venue
- The Neurologist
- Published
- 2008-11
- Volume
- 14
- Issue
- 6
- Pages
- 374-381
- ISSN
- 1074-7931 (ISSN-L)
- OpenAlex
- W2073404528
- Cited by
- 98
- References
- 40
- Citations by year
- 2026: 2 · 2025: 1 · 2024: 2 · 2023: 2 · 2022: 3 · 2021: 6 · 2020: 7 · 2019: 2 · 2018: 8 · 2017: 10 · 2016: 7 · 2015: 7 · 2014: 6 · 2013: 6 · 2012: 10
- FWCI
- 12.25
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- The Neurologist (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Jane and Terry Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Physical Sciences › Computer Science › Information Systems › Information Retrieval and Search Behavior
- Keywords
- multiple sclerosis, online information seeking, internet use, physician-patient communication, patient adherence, health information, quality of life, pain
- MeSH terms
- Adult, Aged, Communication, Female, Humans, Male, Medical Informatics, Middle Aged, Multiple Sclerosis, Patient Participation, Physician-Patient Relations, Retrospective Studies, Internet
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