By Kara Jackman
In 2004, in the days before Web 2.0, and Facebook, I wrote an article about the ins and outs of conducting personal medical research online. Looking back on it now, in a world filled with “fake news,” and few people evaluating the links they share, the article reads as quaint, cautionary advice.
Today social media is such a huge part of our lives. We are easily influenced by the posts and videos people create. Not to mention targeted ads that show up after we’ve Googled something or maybe even just said it aloud.
We often play fast and loose with our own personal information and facts around a topic or issue. As a librarian that teaches research methods and evaluation of resource techniques to masters and doctoral level students, I want folks to read widely and deeply, and then come to their own conclusions about the topic at hand. That said, I also want those claims or beliefs to be backed up with high-quality, well-resourced evidence in the form of books and resources that are peer-reviewed and authoritative.
Further, in an ideal world, I would encourage people to not share information that is not their own online. Let’s say someone posts a link to a video or article, and you see it, but it looks suspect to you. Do not reshare it. Instead, take a deeper dive and look at the creator of the piece of media. In libraries, we call this evaluation of resources. Use this rubric and then decide whether to share the link if it matches your view or take on the topic. Taking time to trace the source of a piece of media delivers better, more factual results.
Sharing and Oversharing
Posting and resharing personal information on social media can be dangerous. (Check out number eight in this article.) Retweeting or sharing posts that are not your own could make others uncomfortable, embarrassed, or worse, even put them in danger. For example, by sharing someone is traveling on medical travel, you could put them at risk of theft, assault, or worse, physical danger. Additionally, sharing medical information without asking permission could potentially violate federal privacy law, a myriad of local privacy laws, HIPAA depending on your connection to the individual, and the person’s trust.
But everyone else is sharing this post, Kara, why shouldn’t I?
Right, I know. I get that. You want to share, to rally support and show an outpouring of love, but please ask permission first. Before you share, check to see if anything they wrote might contain sensitive medical information, or information about whereabouts that could be easily exploited by people outside your inner circle.
Getting Personal
If you are posting about yourself or your family, think about the implications of putting the information out there. Not only are your children minors who cannot consent, you are also the guardian of their digital legacy. The positive side of sharing personal information is its ability to help build community, vent, and explain what you're experiencing and gather the support you need no matter where you are geographically. Measure twice; cut once applies: Draft a post and read it after a few minutes before you click “post” on your share.
In general, keep your posts vague, do not go into great detail about where you are or what you are doing. Limit the amount of medical information in your post; not only do strangers read this - but advertisers, too! Your data is valuable to corporations and this information is private until you share it. Doctors would need waivers to share information about you; so consider your post a waiver of rights.
Stolen Images
Images are another huge issue in our community too. Pirates, predators, and others that are trying to make a quick buck may take photos and use them to gain sympathy and money. If you are worried about this, do what I see my friends with children doing. Post the pictures via a “story” that disappears after a limited time, or post them in a private group established for your child but take them down after a while, so they do not live on Facebook forever. Friends and family, do not share these photos with others without permission from the original poster, especially if they are posted in a story or private group.
Sharing Medical Guidance and Personal Medical Information
Personal medical information is one kind of content that we share on social media. Medical advice, information, and anecdotal remedies are another. Remember this when posing questions about your own care on social media. Some of the responses may not be helpful to your body and medical needs. When doing research on a medical topic, please go to reputable sources like those held in libraries. Many, if not all, resources in libraries are peer-reviewed, or fact checked, for inaccuracies and misinformation. If you are looking online, visit hospital websites or governmental agencies like the CDC or NIH. If you need access to certain medical journals, you can typically obtain this through your local library’s website.
If you simply Google a topic, care to check who wrote the article, who published it, and what sources are cited at the end of the article. Evaluate the resource by using the CRAAP test. If you are reading advice in a forum, take a look at when it was posted, how many “upvotes” it has received, and understand the original poster could be literally anyone. Ask yourself questions like, “Is this information still relevant? What credentials does the author have or claim to have? Is this old, outdated information? What does the writer want to communicate and why? What motivated this author to write this information?”
People can be “wildly careless” about what they say and do on social media. Out in the real world, we do not believe every word we hear people say while walking down the street. Facebook, Twitter, and Instagram feeds are just online sidewalks. You can choose to engage with individuals you are walking by or not. You wouldn’t walk around with your wallet open, taped to your back. Likewise, be vigilant about what you make available online. Social media and the internet are immensely valuable resources when used properly and wisely!
References
Social media etiquette for the modern medical student: …
https://guides.library.duq.edu/informationevaluation/CRAAP
https://www.bustle.com/p/11-social-media-etiquette-mistakes-you-dont-realize-youre-making-7844531
https://www.postplanner.com/blog/facebook-etiquette-mistakes/
https://www.aspenideas.org/articles/how-to-stop-the-spread-of-fake-news-on-social-media
https://penntoday.upenn.edu/news/dangers-sharing-personal-information-social-media
https://digital-photography-school.com/what-to-do-when-your-images-get-stolen/
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