How to find credible health information online

[00:00:00] Host Amber Smith: From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air." Where can a person find reliable health information online? With me today to help answer this question is Olivia Tsistinas. She's an associate librarian at the Health Sciences Library at Upstate. Welcome to "HealthLink on AIr," Olivia..

[00:00:23] Librarian Olivia Tsistinas: Hi there. Amber, I'm happy to be here.

[00:00:26] Host Amber Smith: Now, I know it can be intimidating for someone who has maybe a new diagnosis or a new condition to go online and try to find information about it, especially if this person is not used to doing research. So, where do you advise people to begin?

[00:00:42] Librarian Olivia Tsistinas: Well, the first thing that you're doing right, is going and taking a look to see what's out there.

[00:00:48] Librarian Olivia Tsistinas: I want all of our listeners to know that going and looking online is only going to help them have a more robust conversation with their health care team. So, just congratulate yourself on wanting to go and look in the first place. Once you get, and you're looking at, that search-engine box, there is a lot of results, and it can be really overwhelming.

[00:01:09] Librarian Olivia Tsistinas: One of my favorite places to have people start is MedlinePlus. It comes from the National Institutes of Health and the National Library of Medicine. It's got a lot of wonderful, verified sources, and it's really easy to use.

[00:01:21] Host Amber Smith: And it's free?

[00:01:23] Librarian Olivia Tsistinas: It is free; it is accessible. And the really neat thing about them is that they link to other professional organizations.

[00:01:30] Librarian Olivia Tsistinas: They're not creating their own independent content. So they're really finding some of the best of the best.

[00:01:35] Host Amber Smith: So, MedlinePlus, and that's a government website, essentially.

[00:01:40] Librarian Olivia Tsistinas: It is a "dot-gov" (written as .gov), and so one of the wonderful cues that you can get from some of those web addresses is who's producing them. Anything with the dot-gov address, you know that you're getting it through the National Library of Medicine, National Institutes of Health, and it's going to be verified and credible. There aren't any commercial interests involved in the production of that.

[00:02:00] Host Amber Smith: Now, what else can you tell us about URLs (website addresses)? Because a dot-gov is one, but there's dot-edu, there's dot-org, there's dot-com....

[00:02:10] Librarian Olivia Tsistinas: if it's dot-edu, then it's coming from a school. So, if you went to the Health Sciences Library website our Upstate Health Sciences Library website is library-dot-Upstate-dot-edu (library.upstate.edu). So, you know it's coming from university. If it's a dot-org, that's coming from an organization.

[00:02:25] Librarian Olivia Tsistinas: And that one can be really tricky. Maybe a decade ago or two decades ago, you'd know that that information was going to be from a smaller organization or from a national organization. And now it's a lot more easy for folks to get a hold of that URL. So that one -- proceed with caution.

[00:02:42] Librarian Olivia Tsistinas: If it's a dot-com, all bets are off. It's not really clear if it's commercial interest: It could be a pharmaceutical company, it could be someone that's just interested in separating you from your money.

[00:02:54] Host Amber Smith: So what you're saying is I really need to figure out which websites are trustworthy. And one way to kind of start doing that is looking at the web address or the URL.

[00:03:04] Host Amber Smith: How else can I determine the purpose behind a particular website?

[00:03:08] Librarian Olivia Tsistinas: That's an amazing thing to do. One of the best things to do is to scroll all the way down to the bottom of the page and figure out who created the page. Find the "about us," find when it was published. Is it a recent website? Is it a website that hasn't been touched in over a decade?

[00:03:26] Librarian Olivia Tsistinas: Once you get to that "about us" page, figure out who they are and why they're providing that information to you. Again, are they interested in selling you a new drug that they've created? Are they a support group that's interested in supporting its members, or is it really unclear? Sometimes you can get to the bottom of the page, and there's just a lot of words and not a lot of answers about exactly who the folks are that created it.

[00:03:49] Host Amber Smith: And the articles on there, in addition, do the articles need to be sourced with the name of the author or the reviewer?

[00:03:56] Librarian Olivia Tsistinas: Having an author is really important. If you can find an author right out and then identify what that author's credentials are, then you're really cooking with gas. You've got to be able to figure out what their education is, what their experiences (are) and why they are capable of producing this information for you. Recency is important. So we mentioned, you know, has the article been touched in the last 10 years? Was it published in the last five years, or is it something that is being touted in the news as a new discovery, but actually came out a while ago? The other thing that you can look at when you're looking at a website is what sponsorship is, and if they're asking for money to see more information, if they're trying to get you to give up your information to have access. Do they want your email address? Do they want your name? Do they want your credit card information? And that's all a really great opportunity to take a pause and think about some of the other resources that you have available to you. Like your public library system.

[00:04:56] Host Amber Smith: Now, I worry that if I visit a website and I search for something like "first trimester pregnancy," that I'm suddenly going to start getting ads for all sorts of maternity stuff.

[00:05:06] Host Amber Smith: So, how do I protect myself? If I visit websites, how do I protect my privacy?

[00:05:14] Librarian Olivia Tsistinas: Targeted marketing is relentless, and I've definitely had that experience, too, where I've gone to look at something for a baby shower. And then all of a sudden I'm getting ads thinking that I'm going to be a mom again; I'm not. One way that you can do it is you can open up the browser, and most browsers have an opportunity to search incognito, and that way you're not having any cookies (online tracking) follow you. The internet is not going to track the information about what you're searching, and that can also be helpful if you're in a shared computer situation. So if there's some health information that you're seeking out, that you might not want other computer users in your home to be aware of, that's another great way to do it. Again, I'm going to point you back to the public library. If you went to your public library and you search there, that's a great way to not have those cookies follow you home.

[00:06:00] Host Amber Smith: You're listening to Upstate's "HealthLink on Air." I'm your host, Amber Smith, talking with associate librarian Olivia Tsistinas from Upstate's Health Sciences Library.

[00:06:09] Host Amber Smith: What can you tell us about health and medical apps? How do I make sure that an app that I download to my phone is something I can trust?

[00:06:18] Librarian Olivia Tsistinas: Health apps have a whole other set of criteria. So, you've got your smartphone, and you've got a particular interest. That's usually what starts the search. So, whether you're looking at something to stop smoking, or you're tracking your steps, or you're tracking your mood, you go and you search the app store. The things I want people to think about when they get there is, is it easy to use? Does it look like it's targeted for a consumer, or does it look like it's something for a health care professional? I want you to check out the privacy and security options of that app. What are they collecting on you? And are they interested in taking your information, and then again, selling it to a third party?

[00:06:59] Librarian Olivia Tsistinas: Well, the way to do that is to see if that app has a webpage. So, if you can't find it right in that app store, to go and put that app name into your browser and see if you can find more information on it. Price is always a concern. So if it's free, why is it free? Where is it coming from? Is it a larger organization?

[00:07:18] Librarian Olivia Tsistinas: Is it a smaller organization? Are there in-app purchases, so you're going to only get so far and then it's not going to let you have full access to the services?

[00:07:26] Librarian Olivia Tsistinas: The other thing is evaluation criteria. So not only the star rating. If it's got five stars, that's great. But I want you to continue scrolling and see what the reviews are saying.

[00:07:37] Librarian Olivia Tsistinas: Are there recent issues with an update? It's unclear why all the five-stars are there because all the ones on the very top are all one-stars. And again, to go back to timelines, is it a new app, what has changed recently? And where did you hear about it?

[00:07:52] Host Amber Smith: That's all good advice. Well, let me ask you about Facebook and Twitter and TikTok and all these other social media places.

[00:07:59] Host Amber Smith: People who I know share articles on social media. And I believe most of these people mean well, but how do I know that the article they're sharing is accurate?

[00:08:10] Librarian Olivia Tsistinas: So all of those social media places are rampant with misinformation, and people share it for a variety of reasons. They want to be in the know. They want to take care of their loved ones.

[00:08:21] Librarian Olivia Tsistinas: They want to feel like they're connected to people. One great thing to do is think: If it looks too slick, then I don't know if I can trust it. If it's all very, very polished, and it's not clear where that information is coming from, it's a big pause button. Also, if it seems too strange to be true. Some of these things were created as memes to be entertainment, but then were forwarded as if they were true.

[00:08:46] Librarian Olivia Tsistinas: There was one, a couple of years ago about a certain fish that was bred to have no bones in it, so they could just eat it readily. And when I saw it, I was like, that doesn't make any sense. It didn't make any sense. It wasn't true. Sometimes the websites can look professional, but the stories are false. And that's another opportunity to go down to that "about us" page and figure out what it is, if it's truthful. Sometimes those social media posts can have quotations that have been edited. So, they aren't providing the full statement. They're only providing sensational chunks of the article, and it's the same way with data. So, maybe they took a bigger study, and they only cherry-picked out specific terms and phrases to make it more sensational.

[00:09:29] Librarian Olivia Tsistinas: Misleading graphs is another way that they do it. If you look on the side, and you check out the scale, does it start at zero? Where does it go to? And are they the same if they're comparing graphs? Another one that happens on social media a lot is old images that are being circulated as new information.

[00:09:45] Librarian Olivia Tsistinas: So, those are all a bunch of reasons why, even though our friends who are trying to do the right thing might be sharing old stuff. When you encounter that, once you've become really savvy, and you've started double-checking those things, I also want you to try to be empathetic with the people in your life.

[00:10:03] Librarian Olivia Tsistinas: If you try to bring them the proper source of that information, something really gentle, don't publicly shame them. And try to use really kind inclusive language. They were trying to do the right thing. So, we were going to win more of them over with good information if we're softer and gentler about it.

[00:10:21] Host Amber Smith: So approach some of the information that you see with some skepticism, healthy skepticism.

[00:10:27] Librarian Olivia Tsistinas: I start everything with a lot of skepticism, and it's it's not a bad thing to do. There's health information comes from a variety of places. And unfortunately, when it seems like it's the miracle that you've been waiting for, it's another reason to take a pause and make sure that it's something really wonderful before you get your hopes up.

[00:10:48] Host Amber Smith: So if I gather information from government websites or well-known medical schools or large professional organizations, can I feel pretty secure that the information is credible?

[00:10:59] Librarian Olivia Tsistinas: I would feel really secure in taking that to your health care provider. So that's a really wonderful thing to print off, to have in hand, to take with you and almost treat it like it's your savvy friend that's coming with you to your next medical appointment.

[00:11:13] Librarian Olivia Tsistinas: That's going to be helpful in reminding you what you wanted to address with their health care provider. And it's also going to fit into that evidence-based practice model of where information is coming from. Evidence-based practice comes from our health care's experience, our providers' experience, patient wishes and also the best current evidence.

[00:11:32] Librarian Olivia Tsistinas: So, it's going to be part of your health care team's tool kit,too.

[00:11:37] Host Amber Smith: Do you have any advice for people who are seeking clinical trials?

[00:11:41] Librarian Olivia Tsistinas: So, there is a great website, ClinicalTrials.gov. That's another one where I would want you to reach out to somebody to help you navigate it. Sometimes it can be a little bit hard to figure out.

[00:11:52] Librarian Olivia Tsistinas: I would also reach out to your health care team and say, you know, this is a diagnosis that you've recently given me. Are you aware of any trials and can you help direct me?

[00:12:01] Host Amber Smith: How do you, as the librarian help a regular person, because I know you work with medical students, but just regular people that don't have any training in medicine, how do you help that person make sense of medical journal articles that are written for scientists and doctors?

[00:12:18] Librarian Olivia Tsistinas: So, a lot of the time I'm targeting information created for consumers, but one of the groups that we get a lot are folks that are facing chronic health conditions, or they're in support groups. They're almost like super consumers. So they've already gone through that basic level of information. And they're reaching out to us at Upstate Health Sciences Library because they need a little bit more robust information.

[00:12:41] Librarian Olivia Tsistinas: And so those are the folks that we take a look, and we identify OK, this is a study, it's got a structured abstract, and here's the conclusion of it. And that's a little capsule of information that's right at the beginning of the article that they can then take to their health care team.

[00:12:57] Host Amber Smith: And then their providers can help them make sense of whether this applies to their situation.

[00:13:02] Librarian Olivia Tsistinas: Because what I never want you to do, even if you found an article that looks amazing, it's current, it's got great sources. It's got great references, you've been able to double-check it up and down across the internet. I never want you to use that to make a change in your prescriptions, to stop taking something, to add something, to add an over-the-counter medicine, without talking to your health care team first.

[00:13:25] Host Amber Smith: What topics have you found most difficult to find information about for people?

[00:13:30] Librarian Olivia Tsistinas: Usually that's when things are latest, greatest newest, now. So, if it's not pharmaceutically related, it doesn't get as much funding, so sometimes it doesn't get as well studied, but also if it is something brand new, there is a big gap between our bench science (research) and what's available at the bedside, sometimes up to 15 years.

[00:13:50] Librarian Olivia Tsistinas: And so something that you might see come out, it might be available only for rodents, but they're talking aboutit in the news as if it's available to people. So if it's just studies done on mice and rats, then it's not going to be something that I'm going to be able to find people information for, that they can apply to themselves.

[00:14:08] Host Amber Smith: And some of that gets people's hopes up when they hear a news report about something that's not really clear on exactly how far along the pipeline it is.

[00:14:18] Librarian Olivia Tsistinas: And that can be really hard for the medical library team, because we're the ones delivering the news that maybe it isn't ready for them yet, but it's something that's still coming.

[00:14:29] Host Amber Smith: Well, let's remind listeners again, the No. 1 place to start is the website ...

[00:14:34] Librarian Olivia Tsistinas: ... is MedlinePlus.gov. I refer people there all the time. It's got so many robust resources available to folks.

[00:14:44] Host Amber Smith: Well, I want to thank you so much for making time to share all of this information.

[00:14:47] Host Amber Smith: My guest has been Olivia Tsistinas. She's an associate librarian at the Health Sciences Library at Upstate. I'm Amber Smith for Upstate's "HealthLink on Air."