Social networking sites like Facebook and YouTube can be powerful platforms to deliver and receive health information, especially for patients and caregivers looking to connect and share experiences with others with similar medical issues. However, these sites may lack patient-centered information and can also be sources of misleading content that could potentially do more harm than good, according to the results of two studies
presented at the American College of Gastroenterology’s 76th Annual Scientific meeting in Washington, DC.
In the first study, 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 need guidance in managing difficult nutritional and lifestyle issues following surgery.
Few patient-centered resources are available for this patient population, according to Herbert Wolfsen, MD. The goal of the project was to establish an online community through a Facebook group to help patients and families cope with surgical and post-operative challenges, and help promote disease awareness and esophageal cancer research advocacy in the community.
According to the authors, “connections facilitated through this group have often led to more contact offline to share their personal experiences and information regarding diagnosis and treatment from the perspective of the patient and their family.”
The Mayo Clinic’s interactive Facebook group, which was created 3 years ago to bring together a geographically diverse group of esophageal cancer survivors, allows “patients who may otherwise not have the support they need to connect with others who share their medical concerns,” said Dr. Wolfsen.
The group also provides members with resources including access to new medical information via text postings and links to video content featured 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, researchers at the Cleveland Clinic Foundation analyzed the top 100 most viewed videos relating to inflammatory bowel disease (IBD) for content, popularity, and reliability as a source of patient education information. They found that although YouTube can be a powerful tool for patient education and support, overall IBD content posted on the site 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.”
Because patients with IBD respond differently to various treatments, disease management is often challenging, according to Dr. Mukewar, who said that many patients are constantly searching for new information on IBD and seek out the support of others with the condition, looking specifically for the kind of first-hand patient experience information that their doctors cannot provide. In fact, “recent reports state that 55% of IBD patients are not satisfied with the information provided at time of their disease diagnosis and more than 50% of IBD patients turn to the Internet as a source of information for IBD,” said Dr. Mukewar.
Both Dr. Wolfsen and Dr. Mukewar agree that Internet and social media can benefit patients and enhance their care. However, Dr. Mukewar is worried that patients with IBD may get misleading information via YouTube that could be harmful to their health.
He encourages physicians who have health conditions to post videos about their experience on YouTube, which would provide a resource that is not only medically correct and credible, but also contains the first-hand experience that patients search for online. “YouTube is a powerful platform to deliver and receive healthcare information, but healthcare providers and professional societies need to provide more educational and efficient materials using this powerful tool to counteract misleading information,” said Dr. Mukewar.