Observational studyJournal of medical Internet research2014
Sources of information and behavioral patterns in online health forums: observational study.
Observational study in Journal of medical Internet research, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 25 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 1 synthesis or guideline pooled it.
- From Help-Seekers to Influential Users: A Systematic Review of Participation Styles in Online Health Communities.Journal of medical Internet research · 2015Pooled it
- Personal experiences and emotionality in health-related knowledge exchange in Internet forums: a randomized controlled field experiment comparing responses to facts vs personal experiences.Journal of medical Internet research · 2014Trial
- Quality and Misinformation About Health Conditions in Online Peer Support Groups: Scoping Review.Journal of medical Internet research · 2025Article
- Changes in Alcohol Consumption among Users of an Internet Drug Forum during a COVID-19 Lockdown.International journal of environmental research and public health · 2022Article
- Better safe than sorry: a study on older adults' credibility judgments and spreading of health misinformation.Universal access in the information society · 2022Article
- Examining Patterns of Information Exchange and Social Support in a Web-Based Health Community: Exponential Random Graph Models.Journal of medical Internet research · 2020Article
- Analysis of Answers to Queries among Anonymous Users with Gastroenterological Problems on an Internet Forum.International journal of environmental research and public health · 2020Article
- Differences in Perceptions of Health Information Between the Public and Health Care Professionals: Nonprobability Sampling Questionnaire Survey.Journal of medical Internet research · 2019Article
- Perceptions of Food Hypersensitivity Expertise on Social Media: Qualitative Study.Interactive journal of medical research · 2019Article
- Acceptance of Mobile Health Apps for Disease Management Among People With Multiple Sclerosis: Web-Based Survey Study.JMIR formative research · 2018Article
- Prevention of HIV and Other Sexually Transmissible Infections in Expatriates and Traveler Networks: Qualitative Study of Peer Interaction in an Online Forum.Journal of medical Internet research · 2018Article
- How New and Expecting Fathers Engage With an App-Based Online Forum: Qualitative Analysis.JMIR mHealth and uHealth · 2018Article
- Identifying tweets of personal health experience through word embedding and LSTM neural network.BMC bioinformatics · 2018Article
- Understanding Trail Runners' Activity on Online Community Forums: An Inductive Analysis of Discussion Topics.Journal of human kinetics · 2018Article
- The Use of Online Health Forums by Patients With Chronic Cough: Qualitative Study.Journal of medical Internet research · 2018Article
- Ill Literates or Illiterates? Investigating the eHealth Literacy of Users of Online Health Communities.Journal of medical Internet research · 2017Article
- Health-Related Coping and Social Interaction in People with Multiple Sclerosis Supported by a Social Network: Pilot Study With a New Methodological Approach.Interactive journal of medical research · 2017Article
- Like or Dislike? Impact of Facebook on Ewing Sarcoma Treatment.JMIR cancer · 2016Article
- In Pursuit of Theoretical Ground in Behavior Change Support Systems: Analysis of Peer-to-Peer Communication in a Health-Related Online Community.Journal of medical Internet research · 2016Article
- Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum.Journal of medical Internet research · 2015Article
Corrections and comments
- Erratum issued
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIncreasing numbers of patients are raising their voice in online forums. This shift is welcome as an act of patient autonomy, reflected in the term "expert patient". At the same time, there is considerable concern that patients can be easily misguided by pseudoscientific research and debate. Little is known about the sources of information used in health-related online forums, how users apply this information, and how they behave in such forums.
objectiveThe intent of the study was to identify (1) the sources of information used in online health-related forums, and (2) the roles and behavior of active forum visitors in introducing and disseminating this information.
methodsThis observational study used the largest German multiple sclerosis (MS) online forum as a database, analyzing the user debate about the recently proposed and controversial Chronic Cerebrospinal Venous Insufficiency (CCSVI) hypothesis. After extracting all posts and then filtering relevant CCSVI posts between 01 January 2008 and 17 August 2012, we first identified hyperlinks to scientific publications and other information sources used or referenced in the posts. Employing k-means clustering, we then analyzed the users' preference for sources of information and their general posting habits.
resultsOf 139,912 posts from 11,997 threads, 8628 posts discussed or at least mentioned CCSVI. We detected hyperlinks pointing to CCSVI-related scientific publications in 31 posts. In contrast, 2829 different URLs were posted to the forum, most frequently referring to social media, such as YouTube or Facebook. We identified a total of 6 different roles of hyperlink posters including Social Media Fans, Organization Followers, and Balanced Source Users. Apart from the large and nonspecific residual category of the "average user", several specific behavior patterns were identified, such as the small but relevant groups of CCSVI-Focused Responders or CCSVI Activators.
conclusionsThe bulk of the observed contributions were not based on scientific results, but on various social media sources. These sources seem to contain mostly opinions and personal experience. A small group of people with distinct behavioral patterns played a core role in fuelling the discussion about CCSVI.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.