Ulcerative Colitis Resource Center

Ulcerative Colitis Resource Center

February 23, 2016
3 min read

Experts call for research, physician social media presence to improve quality of IBD-related information

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A recent review article addressing the use of social media and mobile health applications among patients with IBD revealed uncertainty about the quality of available IBD-related information, leading its authors to emphasize the need for research assessing the validity of IBD-related information available on social media platforms, and increased physician awareness and online presence to combat misinformation.

“Over the past several years, social media has made an impact on how patients learn about disease and manage their health,” Jason Reich, MD, from Boston Medical Center, told Healio Gastroenterology. “Social media usage has been well documented in other chronic conditions such as asthma and diabetes, but little is known about its use in patients with inflammatory bowel disease.”

Jason Reich

Along with Ling Guo, MD, and Healio Gastroenterology Peer Perspective Board member Francis A. Farraye, MD, MSc, also from Boston Medical Center, Reich and colleagues sought to describe the use of social media in patients with IBD. Their major conclusions were:

  • social media use among patients with IBD is indeed on the rise;
  • the quality of IBD-related information posted online varies significantly;
  • patients have an increasing desire to receive IBD-related information on social media;
  • and increased physician awareness and presence in social media may benefit patients and institutions.

Lack of data on usage, preferences

While previous research has shown IBD patients frequently use the Internet to obtain health-related information, data on social media usage and preferences in this patient population are sparse.  

“Minimal research has examined how patients with IBD utilize social media in the course of their disease management,” Reich said.

“It does seem clear, however, that patients in general are looking more towards social media to gather information regarding their disease and to share their experiences with others,” Guo added.

A 2009 study showed IBD was “well-represented” among Facebook users and Facebook groups. Moreover, Reich and colleagues used Boston University’s Twitter Collection and Analysis Toolkit to show there were 2,457 IBD-related tweets from 1,646 users from September through early October 2015. A similar analysis was used to examine tweets posted at the 2015 ACG Conferences; this data will be presented at DDW 2016, Reich said.

IBD patients are also using Instagram; a search using #IBD in March 2015 resulted in more than 160,000 posts, they wrote.

Quality of information uncertain

“Little is known about the quality of information that is posted on social media,” Reich said. Despite this, “because patients are increasingly using social media as part of their disease management, physicians must be aware of the range of quality of information that is posted,” he and colleagues wrote.

Ling Guo

Francis Farraye

One study found expert reviewers rated the top Google search results for “Crohn’s disease” and “ulcerative colitis” with a median quality evaluation instrument score of 57/107 and a median global quality score of 2/5. Another quality evaluation of IBD-related websites rated 43% of websites as excellent-to-good and 57% as fair-to-poor, and a study of the 100 most viewed IBD-related videos on YouTube showed poor patient education overall. There have been no studies assessing the quality of IBD-related social media posts.

“These studies illustrate the need for clinicians to have a greater presence in the social media community, to improve the quality of information posted,” the authors wrote.

Physician social media presence

Multiple studies have shown patients are interested in receiving information from physicians on a web-based platform, including a randomized controlled trial showing patients randomized to a web-based disease-specific education preferred it vs. standard of care, and showed greater treatment adherence, improved quality of life, fewer treatment relapses and fewer clinic visits. The study also showed this approach can be cost-saving.

Studies show providers and hospitals “are supportive of social media and mobile health technology for enhancing patient care,” with about seven out of ten U.S. hospitals using social media to educate consumers.

“In a currently ongoing study at BMC, we have found that there is interest among IBD patients in having their gastroenterologist post education-related information on social media,” Guo said.

“As patient use of social media to obtain health-related information increases, individuals, providers, group practices, and hospitals should take an active role in using social media to provide health-related information,” Reich and colleagues wrote. A social media account can keep a provider informed, foster networking with colleagues and provide patient education, and while concerns about confidentiality and privacy exist, “physicians can use social media in an intelligent and safe manner.”

Future research

“Our review proposes several areas of future research, including a quality assessment of IBD information posted on social media,” Reich said. “We also feel there is a need for an assessment of how social media and mobile phone applications can potentially improve clinical outcomes of patients with IBD.”

“Given the dearth of information available in the literature on IBD patients’ preferences and usage of social media, this area needs further research and is currently being addressed with an ongoing survey study at our institution with extension to additional sites in the future,” Farraye said.

Additional areas for potential research include examining discrepancies between interest and actual usage of web-based sources of health information, and an exploration of how patient portals may benefit patients with IBD. – by Adam Leitenberger

Disclosure: The researchers report no relevant financial disclosures.