A family medicine resident in training at the Dell Medical School at The University of Texas–Austin, Dr. Emily McCullar describes herself as a consumer of social media. And not surprisingly, just as people might talk about relationships or sports or fashion trends or anything else under the sun online, she notes, it’s common to see health topics floated on Facebook, Twitter and other social sites.
The result? In the Information Age and the modern era of continuous Internet connectivity, it’s a bit of the Wild West meets well-meaning meets personal biases sometimes mixed with a dash of celebrity influence and even some opportunistic salesmanship. In short, while online social communities can be a place for supportive, insightful and helpful note-sharing, experts say, when it comes to friendsourcing — or essentially crowdsourcing, or polling, social connections — for their take on a health question or concern, anything goes.
[See: Apps to Mind Your Mental Health.]
McCullar, who penned a warning against seeking answers to medical questions from friends on social for the blog KevinMD.com, says she was particularly alarmed, for example, to see on Facebook a young person with a cancer diagnosis electing to use natural oils and forego any operation or chemotherapy or radiation. She was opting against evidenced-based options being offered by the medical community, McCullar says. “That was disturbing to me.”
It should, of course, come as a surprise to no one that health advice or anecdotal experiences shared by friends, family or other social connections without formal medical or health training might not meet accepted clinical standards of care. That much is plainly apparent — or, experts say, it should be. “In my clinical experience as a family physician, there are both positives and negatives to patients using social media to broach health concerns. On one hand, those who want or need to easily and quickly find others who have similar conditions can turn to social media for support,” says Dr. Tammy Chang, an assistant professor in the department of family medicine at the University of Michigan Medical School, and a member of the U-M-based Institute for Healthcare Policy and Innovation. “On the other hand, I often care for patients who come to me with more stress and anxiety as a result of receiving false information online about their health condition or treatment.” With the explosion of information online today, people need to become savvier about where and from whom they get information — “so they can make the best choices for their health,” Chang says. “Often that still means running things they find online by a health professional.”
In addition to getting a second opinion in-person — from a trained health professional — there are other things experts say you can do to limit the potentially harmful effects from amateur armchair cyber pseudo-consults, while still reaping benefits from participating in a brave new social world.
Don’t throw out the parents’ blog with the baby advice bathwater. You’re going to get some rotten advice online (as you probably have in person). However, certain aspects of social are proven to be more beneficial than others. In reviewing research that’s looked at the impact of social media on chronic disease outcomes — with many turning to social for help and support in managing a chronic condition — Chang says she and fellow researchers found “social media was most likely to be beneficial when it was used to provide social, emotional or experiential support.” Particularly, for someone dealing with a rare disease or debilitating condition that makes it hard to physically travel to get face-to-face support, she says social can provide a venue where a person can receive support. That way, they “don’t feel so alone,” Chang says.
[See: 7 Ways Technology Can Torpedo Your Health.]
Be choosy in selecting an online community. Like with picking friends in the flesh — some of whom might be a part of your online community — it’s important to be particular if you’re going to be joining a group for support and to compare notes regarding a health concern. Is the group led by a health professional or by a health organization you trust? Some national organizations, like the American Cancer Society, offer online communities and support to those facing particular medical issues, like a cancer diagnosis.
Consider your privacy — now and forever. By now, it should be wildly apparent that nothing dies online — not even the information of the deceased, many who still have a Facebook account. There’s no recall button on personal health disclosures on social, either (hitting “delete” certainly won’t do it). “People need to decide how much they choose to share and disclose,” says Melissa Napolitano, an associate professor of prevention and community health at George Washington University Milken Institute School of Public Health. And she says it’s important to make that decision upfront, so a person is able to stay consistently within his or her comfort zone online.
Think about what your friends don’t know, too. Just as you may decide you don’t want to share your full health history online, Chang says it’s important to remember that unlike a physician who is doing a face-to-face check-up — observing everything from your demeanor to physical symptoms — your most well-meaning adhoc online advisors won’t and can’t have the complete picture. That includes perhaps some embarrassing health information you’d rather not disclose (which, experts say, is just fine in the interest of online privacy, though you should resist the urge to withhold information from your doctor). That’s one more reason to take suggestions with a grain of salt, Chang says.
Beware of the shared link. It may seem semi-authoritative when a friend provides a link to back his or her take on what you should do about that rash. But as Chang has discovered in researching information people found online about weight gain during pregnancy, even content that seems share-worthy can leave much to be desired. “We found that for-profit sites dominated the online space and the information [on] these sites often [was] inaccurate, incomplete or didn’t give any specific recommendation on how much a woman should gain during pregnancy,” she says. Rely instead on public health organizations and other trusted health authorities for online information, just as you would offline.
[See: Do’s and Don’ts of Home Medical Devices.]
Similarly, McCullar reiterates it’s important to strongly consider whether health advice one encounters online is evidence-based. She thinks that’s where medical training is particularly advantageous in more deeply evaluating the quality of health information, including in ways that may not be intuitive, to arrive at a recommendation. To put it another way, a consensus of friends supporting a health decision doesn’t really prove anything. “I think really it’s OK to ask anyone and to ask any group, it’s just crucial to keep in mind that people — no matter who they are, providers or otherwise, have bias and motivation and a difference in experience that can [contribute] to what they say to you,” McCullar says. “So it’s just important to keep those things in mind and be able to question for yourself what you should really put into practice.”
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Should You Friendsource Health Questions on Social? originally appeared on usnews.com
