So you suspect you have a rare disease. Do you call your doctor or head for the internet? If you’re like most Americans, you start with the web, searching for everything from symptoms to medical facts to emotional support.
According to a 2012 Pew Research Center survey, 72 percent of adults have searched online for information about a range of health issues, the most popular being specific diseases and treatments. Sixteen percent of adults have gone online to find others who share the same health concerns.
When like-minded users come together online, they often form virtual health communities in which they share intimate details of their diagnoses, treatments and coping mechanisms. Some become active users who post comments daily; others simply scan the conversations but never post.
UC San Diego researcher
James Fowler, in his book
Connected, writes that a key factor in determining our health is the health of others. “We are affected not only by the health and behavior of our partners and friends, but also by the health and behavior of hundreds or thousands of people in our extended social network.”
So if you’re inside a network that’s purely focused on a chronic disease such as diabetes or perhaps late stage breast cancer, how is your health affected?
Researchers at UC San Diego have looked into whether posts within these common interest sites influence surgical decisions. When Angelina Jolie revealed her breast cancer diagnosis and treatment in 2013, some researchers decried the “Jolie effect,” declaring that women decided to get preventive double mastectomies primarily based upon Jolie’s example.
However, when researcher Rebecca Marmor, MD, looked into the impact of online chat rooms on patients’ treatment decisions, Jolie’s name did not appear once.
Marmor and a group of UC San Diego colleagues conducted a 2016 study to explore the controversy of why so many women with non-genetic breast cancer were requesting
contralateral prophylactic mastectomy, even though the operation did not improve their survival.
“We expected to find that women in these online rooms would discuss surgical options, including risks and benefits,” said Marmor, an informatics fellow and surgery resident at UC San Diego School of Medicine. “Surprisingly, we found that 95 percent of posters had already undergone surgery. Few who were posting in chat rooms had not already had an operation.”
“The more that I delved into these online health communities, the more I found groups of people really trying to support each other. The conversations were appropriate. Users encouraged other users to talk to their doctors and were upfront in saying they could not offer medical guidance.”
Jina Huh, PhD, assistant professor of medicine, described four types of chat room users or personas in the
Journal of Biomedical Informatics.
“We identified four broad categories of visitors to online health communities from an online survey of more than 180 online health community users,” said Huh. “These users included ‘caretakers, opportunists, scientists and adventurers’.”
Huh explained that caretakers cite emotional support as a high value in visiting these communities. Caretakers can be senior forum users who welcome and initiate new participants and provide emotional support as informal moderators.
Opportunists are visitors who find the online community after a Google search. They jump into the online rooms, get their answers, leave and don’t go back.
Scientists are users who want scientifically validated information from these forums. For information to be deemed valid, they require empirical evidence.
Adventurers are looking for cutting-edge information or tips on alternate therapies and treatments, such as off-label drug uses not offered by their clinicians or local hospitals.
Huh’s advice to newly diagnosed patients who are seeking an online resource for peer support is to investigate the websites of non-profit organizations. Look for clear disclosures of board members and funding support. In general, non-profit organizations help curate diverse information from academic research and blog articles by health experts and patient representatives.
“The National Library of Medicine offers a tutorial to the public to help evaluate the health information you find on the web,” said Huh. “The tutorial reminds you to look for evidence backing medical claims and other tips for validating information.”
Huh says that Google does a good job of filtering out forums with bad reputations. Google PageRank Algorithm, the rule-based process Google uses to rank search results, helps to qualify sites by calculating who is linking to them.
“Don’t pick a site ranked high because they paid for the ranking or sites that have a lot of advertisements,” said Huh. “Pick a site from a non-profit organization, such as the American Cancer Society or the American Diabetes Association or from a university-based hospital. These sites are more trustworthy and often have a variety of forums set up specific to the interests of users.”
Huh reminds users to be aware that their posts may be public or widely seen, even if they are required to create a user name and password to post. Depending upon the site, their information might potentially be used for activities like targeted advertising.
“There is a certain level of trust involved in using online forums. One hopes that companies are not using information on the boards for their own profit,” said Huh. “It’s up to the individual user to see the tradeoff. Your information may be collected for for-profit activities, but does this outweigh the benefit of using the boards and being part of an online community? Online health communities have been shown to provide unique benefits that other information sources cannot provide. It’s up to you to decide. Just know that conversations online are not private.”
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