Social media sites providing health info need greater transparency

WASHINGTON – Although social networking sites can be useful tools to disseminate healthcare information, some sites fall short of providing patient-centered resources and even provide misleading data, according to two studies that were presented at the American College of Gastroenterology's ACG) 76th Annual Scientific meeting in Washington.

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.

"We have successfully worked with a highly motivated group of 65 patients who have been diagnosed with and treated for esophageal cancer and Barrett's high grade dysplasia," said researcher Herbert Wolfsen, MD.

Few patient-centered resources are available for families and caregivers facing important treatment decisions after being diagnosed with esophageal cancer, according to Wolfsen. He said 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.

"Connections facilitated through this group have often lead to more contact offline to share their personal experiences and information regarding diagnosis and treatment from the perspective of the patient and their family," Wolfsen said.

Since 2008 Wolfsen and his team recruited patients and their families to join and participate in the Mayo Clinic's interactive Facebook group, which was created to bring together a geographically diverse group of esophageal cancer survivors. "Many of these patients do not live close enough to attend the quarterly support group meetings held at Mayo in Jacksonville, so the online group has allowed patients who may otherwise not have the support they need to connect with others who share their medical concerns," he said.

Much of the discussion and support revolves around strategies for coping with post-operative changes, especially with daily activities such as diet, nutrition and swallowing and regurgitation problems, according to the study's findings. The group also provides members with many resources including access to new medical information via text postings and links to video content on the Mayo Clinic YouTube channel, schedules of group meetings, treatment options and advice and support for patients, family and caregivers during recovery.

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.

"Clinicians and their patients need to be aware of misleading information posted by patients or particularly by pharmaceutical companies who often post videos to make it seem like they are coming from a patient when in actuality it is a company advertisement," said researcher Saurabh Mukewar, MD. "These sources are not transparent."

Crohn's disease and ulcerative colitis are the most common forms of IBD, which affect more than 1.4 million Americans. 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 Mukewar, 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.

"Recent reports state that 55 percent of IBD patients are not satisfied with the information provided at time of their disease diagnosis and more than 50 percent of IBD patients turn to the Internet as a source of information for IBD," said Mukewar.

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.

"The success of Mayo's Esophageal Cancer Survivor Facebook group clearly demonstrates how social media can assist healthcare providers in providing patients with a way to connect and get the support they need that physicians cannot provide because we have not experienced the disease first hand," said Wolfsen. "We are also able to provide the latest Barrett's disease and esophageal cancer research information and emphasize high quality sources of online information such as the Mayo Clinic YouTube channel."

According to Mukewar, "one of the best resources for patients ideally would be physicians who also have health conditions and who can post a personal experience video on YouTube, for instance, that would not only be medically correct, credible and trustful but would also contain that first-hand experience that patients with a disease like IBD really crave and search for online."

"The Internet and social media are not going away — YouTube is a powerful platform to deliver and receive healthcare information," said Mukewar. "But healthcare providers and professional societies need to provide more educational and efficient materials using this powerful tool to counteract misleading information."

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