Nearly 50 percent of patients search out information on the Internet, a portal rife with poor information, researchers reported Monday.
In one survey, researchers at Cleveland Clinic, a non-profit medical center, found that most of the top 100 most popular YouTube videos about inflammatory bowel disease contain poor information. They presented their findings, which have not yet been peer reviewed, on Monday at the American College of Gastroenterology annual meeting in Washington, D.C.
Over 50 percent of patients look to the Internet for information about their medical conditions, said Saurabh Mukewar, a medical resident at Cleveland Clinic, Ohio, referring to the YouTube study.
Over 1.4 million Americans are affected by the two most common forms of the bowel disease- Crohn's Disease and ulcerative colitis, which includes inflammation of the intestines. The often painful and lifelong nature of inflammatory bowel disease prompts many patients to seek support from others via Internet forums and social media. That can be helpful, Mukewar wrote in a statement published by the ACG, but it can also pose a challenge for health care providers.
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 patients when in actuality it is a company advertisement, Mukewar said in a statement. These sources are not transparent.
Many patients, 55 percent, are unsatisfied with the health information they find on the Internet, the study found.
Still, many patients benefit from using the Internet to get information on their illness and network with other patients, says Jeffrey Roberts, founder and member of IBSgroup.org, a patient advocacy group for those with another gastrointestinal condition called irritable bowel syndrome. His organization works with pharmacy representatives and researchers to promote new treatment options as they become available.
Our IBS community is quite active and quite large, he said.
The Toronto and New Haven, Conn.-based organization started in 1987 as a support group and expanded onto the Internet in 1995. Roberts said 45,000 people post messages to the forum on IBSgroup.org. Around 200,000 people visit the IBS Web Site each month, Roberts said. We try to arm patients with knowledge.