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Listening to IBS patients in the 21st Century

Jeffrey Roberts

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Jeffrey Roberts


Listening to IBS patients in the 21st Century. Offerings from an on-line Self Help and Support Group (IBSgroup.org)

A. Ouyang (1), N. Inverso (1) , S-M Chow (2), A Kumar (3), B Zhong (4)

1.Department of  Gastroenterology and Hepatology,  College of Medicine and Penn State Health, Penn State University, Hershey PA

2.Department of Human Development and Family Studies, College of Health and Human Development, Penn State University, University Park, PA

3.Department of Supply Chain and Information Systems, College of Business, Penn State University, University Park, PA

4.Department of Journalism, College of Communications, Penn State University, University Park, PA


Social media is a source of information about health matters for a growing number of patients

Understanding and potentially interacting via social media will be important to ensure that patients are receiving timely and scientifically sound information

Social media interactions may offer insights into disease processes that may not be evident with single patient-physician interactions.


Publications both precede and follow postings suggesting that the source of information to patients is multivariant and not solely determined by timing of biomedical research.

Forum users’ interest in diet has increased substantially in the past 4 years but this increase in interest is not reflected in the publication trends, other than FODMAP.

Patient posts suggest more interest in treatments than in understanding the cause of IBS while publications are more focused on pathophysiology

Publications tend to peak and decline over a time period (possibly driven by funding trends)

Except for serotonin, the number of posts for diet and treatment keywords persist or increase despite a drop off in publications

Exchange of information on public forum may follow a power law: the postings appeared to be dominated by a few individuals 


Jeffrey Roberts, Founder of IBSgroup.org for helpful discussions

Manoj Velumani and Fan Yang for data analysis

Funding for this study was provided by NSF grant SES-1357666 and NIH grant R01GM105004,

Penn State Quantitative Social Sciences Initiative and UL TR000127 from the National

Center for Advancing Translational Sciences.

Link to full size image.


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