- Module 1: IBD Social Netnography
- What is Social Netnography?
- How Can Social Netnography Help in IBD?
- Social Media Posts
- Main Themes from IBD Social Netnography
- Thematic Network
- Negative Experiences and Concerns with Biologics
- Decision-Making Surrounding Biologic Use
- Positive Experiences with Biologics
- Information- and Support-Seeking from Online Community
- Cost of Biologics
- What Does IBD Social Netnography Teach Us?
- Module 2: IBD Conjoint Analysis
The study examined 1,598 social media posts made by patients with IBD.24 Of these posts, 452 (28%) discussed the risks and benefits of biologics. The Table24 below presents the source websites for the included posts. The Table reveals that IBD patients post on a large number of varied sites. Some sites may be well known to you (e.g., Facebook, Twitter), while others may be less familiar. For those gastroenterologists who have an active IBD practice, it may be fruitful to visit some of these sites to learn more, first-hand, about what patients are posting and talking about online. You may even want to refer your patients to some of the higher quality sites.
Which sites are high quality, and what information are patients looking for online? Researchers have answered these questions in previous peer-reviewed studies. In a survey of 271 IBD patients in Canada, Wong and colleagues evaluated the information needs and preferences of patients. The authors found that 64% of IBD patients regard websites as a “very acceptable” source of disease-targeted information and frequently use websites to learn about key topics, including long-term prognosis, medication side effects, self-management of symptoms and when to involve a doctor, and dietary guidance, among others.25 However, not all websites are created equal, and many feature information that is not evidence-based or, worse, simply inaccurate or misleading. This becomes clear after examining patient perceptions on social media, because many patients describe remedies and treatment approaches that are not supported by evidence. For this reason, it is helpful to know which websites and online resources can be trusted, and which to recommend to patients. An independent review of IBD website quality performed by Promislow and colleagues found that the top-rated educational websites for IBD information were the Crohn’s and Colitis Foundation (CCF) website, About.com, HealthCentral, and WebMD.26 The authors also concluded that “most websites provided at least adequate information on common symptoms, complications, treatments and what is known (or not known) about the causes of IBD.”26 But the authors also warned that “many websites did not provide adequate information about prognosis, possible side effects of treatment, and risks of developing cancer.”26
The list of websites below are different from those reviewed by Promislow and colleagues, as they are primarily online forums where patients exchange notes and ideas, rather than primary educational sites such as those run by the CCF or WebMD.
|Crohn's Forum||www.crohnsforum.com||72 (15.9%)|
|The Bump||www.thebump.com||4 (0.9%)|
|The J-Pouch Group||www.j-pouch.org||2 (0.4%)|
|living with PSC||www.livingwithpsc.org||1 (0.2%)|
|Dysautonomia Information Network||forums.dinet.org||1 (0.2%)|
|Diaper Swappers||www.diaperswappers.com||1 (0.2%)|
|Professional Muscle||www.professionalmuscle.com||1 (0.2%)|
|Crohns Sanity||www.crohns-sanity.org||1 (0.2%)|
|Physical Evaluation Board Forum||www.pebforum.com||1 (0.2%)|
|Spondylitis Association of America||forums.spondylitis.org||1 (0.2%)|
|International Skeptics Forum||www.internationalskeptics.com||1 (0.2%)|
|babycenter community||community.babycenter.com||1 (0.2%)|
|Just Mommies||www.justmommies.com||1 (0.2%)|