Social Media: Important but Often Misleading Source of Healthcare Information

Social networking sites like Facebook and YouTube can be powerful platforms to deliver and receive healthcare information, especially for patients and caregivers who are increasingly going online to connect and share experiences with others with similar medical issues or concerns.

However, these sites may lack patient-centered information and can also be sources of misleading information that could potentially do more harm than good, according to the results of two separate social media-related studies unveiled today at the American College of Gastroenterology's ACG) 76th Annual Scientific meeting in Washington, DC.

In the first study, "Social Media for Esophageal Cancer Survivors," researchers from the Mayo Clinic in Florida found that social media is an important resource for patients and their caregivers who are facing important treatment decisions after being diagnosed with esophageal cancer and managing difficult nutritional and lifestyle issues after esophageal surgery.

Few patient-centered resources are available for families and caregivers facing important treatment decisions after being diagnosed with esophageal cancer, according to Dr. Herbert Wolfsen, MD. He said that the project goal was to establish an online community through a Facebook group to assist patients and families anticipate -- and cope with -- surgical and post-operative challenges after being diagnosed with esophageal cancer. The group also helps promote disease awareness and esophageal cancer research advocacy in the community.

In a second study, "YouTube: A Friend or Foe When You Are Taking Care of IBD Patients," researchers at the Cleveland Clinic Foundation analyzed the top 100 most viewed IBD-related videos for content, popularity and as a source of patient education information. They found that while YouTube can be a powerful tool for patient education and support, overall Inflammatory Bowel Disease (IBD) content posted on YouTube was poor.

Crohn's disease and ulcerative colitis are the most common forms of IBD, which affect more than 1.4 million Americans. Both conditions inflame the intestines, leading to bouts of watery diarrhea, rectal bleeding, abdominal cramps and pain, fever, and weight loss. Crohn's disease can occur anywhere in the digestive tract, often spreading deep into the layers of the affected bowel wall. Ulcerative colitis usually affects only the innermost lining of the large intestine and rectum.

Patients with IBD respond differently to various treatments and inflammatory bowel diseases are life-long disorders, so from a healthcare standpoint, disease management is often challenging, according to Dr. Saurabh Mukewar, MD, who says many patients are constantly searching for new information and seek out the support of others with IBD -- and want the kind of first -- hand patient experience information that their doctors cannot provide.

Both Wolfsen and Mukewar agree that Internet and social media can benefit patients and enhance their care. But Mukewar said his findings are concerning to him since IBD patients may get misleading information via YouTube that could be harmful to their health.