The Potential Role of Inflammatory Bowel Disease Social Media in Contemporary Medical Practice
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Abstract
Background: Patients with Inflammatory Bowel Disease (IBD) often experience relapsing symptoms, undergo numerous surgeries, and require ongoing support to cope with chronic physical, psychosocial, and emotional burdens. There is a paucity of research specifically addressing the prevalence, characteristics, and use of social media for IBD patients.
Objective: We sought to characterize the prevalence and activity of IBD-related groups, topics, resources, and individuals in three popular social media outlets, specifically Facebook, Twitter, and blogs.
Methods: All media outlets were screened for IBD, Crohn’s, and Ulcerative Colitis (UC) social media in the English language. Search was used along with a snowball technique to find other instances that might not have come in a search. IBD-related pages on Facebook were classified according to type of page (community, non-profit, health website, etc.), date of inception, and number of “likes†and “followers.†Both organization and individual IBD-related Twitter accounts were classified according to number of tweets, followers, and mentions. Due to the multitude of IBD, Crohn’s and UC Twitter accounts, multiple accounts were cross-referenced for the top fifteen most followed individual or organization-associated accounts. IBD-related blogs were identified based on duration of activity, number of posts, and number of comments. When available, website traffic was recorded.
Results: Our search identified 91 Crohn's-related Facebook pages, the majority of which were sponsored by non-profit organizations. The Crohn’s and Colitis Foundation of America (CCFA) page leads Crohn’s-related pages with 25,472 likes. There are 122 UC-specific pages, the most popular being UC Awareness with 4,092 likes. There are combined Crohn’s and UC Facebook pages, the most receiving 7,672 likes. We also identified fourteen Facebook groups serving both Crohn’s and UC with as many as 3,944 members. The majority of IBD-related Twitter accounts were owned by individuals, most with fewer than 1,000 followers. Organization accounts carried considerably more followers. The CCFA account was followed by 7,919 users. Sixty IBD-related blogs were identified, the earliest postings beginning in 2007. Content varied from dietary recommendations, coping with disease symptoms and therapy side-effects, to discussing experiences from surgical procedures. In all three media outlets, posted material was predominately personal submissions, photos, or videos, followed by recommendations for available treatments, advertisements or links to medical institution or organization-sponsored sites.
Conclusions: The variety and popularity of IBD-related social media provide a valuable opportunity to bridge health care providers with patients. The content encountered suggests a significant gap between information discussed within the provider/patient relationship and that which is shared on social media outlets. While there is not an objective method to evaluate validity or value of social media content, there is intrinsic value that can be ascribed based solely on popularity and activity. While our study did not intend to quantify all of IBD-related social media, we identified the most popular outlets that patients with new diagnoses or new exposure to social media will encounter. The growing number of internet groups, posts, and conversations about IBD support the necessity of social media as a mode of personal expression and interaction that until now has not been recognized as a significant dimension of the patient experience. The intimate nature of IBD-related content offers insight for health care providers to address deficiencies not addressed within the traditional framework of medical practice. Further studies evaluating the effect of social media use and participation in patients with chronic disease will be instrumental in understanding the utility of these modalities in contemporary medical practice.
Objective: We sought to characterize the prevalence and activity of IBD-related groups, topics, resources, and individuals in three popular social media outlets, specifically Facebook, Twitter, and blogs.
Methods: All media outlets were screened for IBD, Crohn’s, and Ulcerative Colitis (UC) social media in the English language. Search was used along with a snowball technique to find other instances that might not have come in a search. IBD-related pages on Facebook were classified according to type of page (community, non-profit, health website, etc.), date of inception, and number of “likes†and “followers.†Both organization and individual IBD-related Twitter accounts were classified according to number of tweets, followers, and mentions. Due to the multitude of IBD, Crohn’s and UC Twitter accounts, multiple accounts were cross-referenced for the top fifteen most followed individual or organization-associated accounts. IBD-related blogs were identified based on duration of activity, number of posts, and number of comments. When available, website traffic was recorded.
Results: Our search identified 91 Crohn's-related Facebook pages, the majority of which were sponsored by non-profit organizations. The Crohn’s and Colitis Foundation of America (CCFA) page leads Crohn’s-related pages with 25,472 likes. There are 122 UC-specific pages, the most popular being UC Awareness with 4,092 likes. There are combined Crohn’s and UC Facebook pages, the most receiving 7,672 likes. We also identified fourteen Facebook groups serving both Crohn’s and UC with as many as 3,944 members. The majority of IBD-related Twitter accounts were owned by individuals, most with fewer than 1,000 followers. Organization accounts carried considerably more followers. The CCFA account was followed by 7,919 users. Sixty IBD-related blogs were identified, the earliest postings beginning in 2007. Content varied from dietary recommendations, coping with disease symptoms and therapy side-effects, to discussing experiences from surgical procedures. In all three media outlets, posted material was predominately personal submissions, photos, or videos, followed by recommendations for available treatments, advertisements or links to medical institution or organization-sponsored sites.
Conclusions: The variety and popularity of IBD-related social media provide a valuable opportunity to bridge health care providers with patients. The content encountered suggests a significant gap between information discussed within the provider/patient relationship and that which is shared on social media outlets. While there is not an objective method to evaluate validity or value of social media content, there is intrinsic value that can be ascribed based solely on popularity and activity. While our study did not intend to quantify all of IBD-related social media, we identified the most popular outlets that patients with new diagnoses or new exposure to social media will encounter. The growing number of internet groups, posts, and conversations about IBD support the necessity of social media as a mode of personal expression and interaction that until now has not been recognized as a significant dimension of the patient experience. The intimate nature of IBD-related content offers insight for health care providers to address deficiencies not addressed within the traditional framework of medical practice. Further studies evaluating the effect of social media use and participation in patients with chronic disease will be instrumental in understanding the utility of these modalities in contemporary medical practice.
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