Patients, parents and doctors deal with flood of online information 

Host Amber Smith: Upstate Medical University in Syracuse, New York, invites you to be The Informed Patient, with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith.

You can find lots of information on social media, but how much of it can you trust, especially if you're a parent with a child going through cancer treatment?

Upstate's Dr. Amy Caruso Brown is one of the researchers who explores this topic in a paper for the journal Pediatric Blood and Cancer. Dr. Caruso Brown is an associate professor of bioethics and humanities and of pediatrics at Upstate, and she specializes in pediatric hematology/oncology.

Welcome back to "The Informed Patient," Dr. Caruso Brown.

Amy Caruso Brown, MD: Thank you for having me.

Host Amber Smith: Let's begin by first explaining how this research was done.

Amy Caruso Brown, MD: This is a study that started a few years ago, back before COVID, and we were interested in talking to families of children with cancer about their experiences using social media, and in particular using social media to find information related to the care of their children with cancer.

We ended up with a study with 90 parents of children with cancer. Some had finished therapy, some were going through therapy, so they were at all different time points in their journeys, and we recruited them through nonprofit organizations that support families of children with cancer.

Host Amber Smith: Was there a questionnaire that you gave to them? Or how did that work?

Amy Caruso Brown, MD: In the first part of this study, we put out flyers mostly on social media, shared by these organizations and invited people to contact us if they were interested in participating.

When they reached out, we gave them a little information about the study: what we were planning to use the data for, risks and benefits of participation -- the usual things that we would share in research, and if they agreed to participate, we sent them a link to an online questionnaire that asked them about their experiences.

And then we also asked them if they would be willing, after filling out the questionnaire, to participate in a follow-up interview. And if they agreed to participate in a follow-up interview, we had a Zoom call, not dissimilar to being on a podcast, where we recorded and asked them questions about their experience. We asked them some follow-up questions based on their questionnaire responses, and those usually took about an hour to complete.

Host Amber Smith: How did you go about analyzing their responses on the questionnaires?

Amy Caruso Brown, MD: So, we used one, one of several different approaches to qualitative data. Qualitative data is narrative data, words, information, interviews, it could be focus groups. There's lots of different kinds of qualitative data. If you wanted to analyze, as I did in another study, how people write about pediatric cancer treatment refusal in newspapers, that would be a way of looking at qualitative data. So this kind of qualitative data was written data from the questionnaires, and then the transcribed data from the interviews. We actually had a service who took all of the interviews and wrote down everything that was said and sent it back to us.

And then the approach we used was called thematic analysis. So we had a research team that consisted of about six people, and we were going through those questionnaire answers and those transcripts, coding or sort of looking for themes that reoccurred in response to some of the questions we asked, or sometimes they would come up later in several different questions. And over a pretty long process in thematic analysis, eventually we agreed upon the major themes, we agreed upon the connections between those themes, how did they relate to each other, and then we went back through all the data again with that framework in mind to see what we could find out.

Host Amber Smith: Now, in your study, I'm curious about what social media counted: Facebook groups, or are you talking about just being online and Googling things?

Amy Caruso Brown, MD: Internally, we defined social media, and this wasn't the way we described it to parents because it's not the easiest way to understand, but the specific definition we used for ourselves was anything where you dynamically create and share content, rather than merely obtaining information, which when we asked the parents, we had a couple of screening questions for eligibility. We didn't say you had to create content, but you had to be using sites where content could be created, so it wasn't just typing into a search engine, but it might've been just typing into Facebook and saying, "Let me see what hits that come up with this."

So, some of the parents in the study described being more passive in their use, where they consumed things other people had created in their search for information.

And some parents had much more of that sort of multidirectional exchange, where they were producing information that was consumed by other people as well as gathering their own information for their own use.

Host Amber Smith: Did the parents explain what led them to turn to social media? Was this something they stumbled into or did they actively go looking?

Amy Caruso Brown, MD: There's sort of two ways to answer that question. The bigger one is that most people didn't have to turn to social media because they were already using it quite a bit. Some of our questions asked about your baseline social media use before their children were diagnosed, and most people were already regular users of social media with variable frequency.

But I don't think I had anyone who said they created, say, a new account just because their child had been diagnosed with cancer. So I think that's the first, and maybe most important, thing to understand, is that we turn to social media when we're diagnosed with a serious disease or have a family member going through treatment for a serious disease because we're already using it.

And parents, in particular, if you think about the generation that have younger school-age children, this has been around for a really long time now. People have been turning to it for all kinds of things, like, "My child's still wetting the bed. What are some potty training strategies I can use?"

And so in some ways, looking for information related to their children's diagnosis of cancer was just a super-normal part of everyday life. It just fit into the framework of what they were already doing. But when we asked people specifically, why did you turn to social media related to your child's diagnosis? there were a whole host of overlapping reasons, but the biggest one, the one 90% of the participants cited, was for emotional support.

Host Amber Smith: So in terms of results, how many parents said that they had information from their child's oncologist that conflicted with information they found on social media?

Amy Caruso Brown, MD:

That was one of the main questions that motivated us to do this study, was an interest in understanding how frequently conflicting information comes up and how people navigate it. And so, 70% of our participants said that that had happened to them, that they had read or been told something on social media that was in conflict with what their pediatric oncologist had told them.

Host Amber Smith: What sorts of information was in conflict?

Amy Caruso Brown, MD: Everything, really, everything from information about the diagnosis itself or diagnostic testing, through prognosis, treatment, supportive care, use of complementary and alternative medicine. All of these came up in different examples.

One of the really common ones that stood out to me related to restrictions or guidance around everyday life while going through cancer therapy. So, several different parents described that they came to understand how much of medicine is not evidence-based, but maybe tradition-based or cultural, when parents talked about things like, did your oncologist say it was OK to go swimming or OK to go swimming in a lake or a natural body of water where there might be some bacteria, specifically.

And then parents said that they had left the hospital feeling really clear on like, these are the things I can't do during treatment; these are the things we can do. And then when they talk to other parents, they saw actually, "Oh, there's this huge range of advice being given at different centers, and depending on where your child is treated, you may get very different guidance about what's OK or what's not OK."

Host Amber Smith: Did you find that parents in general put more stock in the doctor or in the social media?

Amy Caruso Brown, MD: It varied. The vast majority of parents described sort of an approach to verifying the information, with some common overlapping elements that many different parents brought up in the study. So, many parents would first take that information back to their oncologist and say, "You know, I read this online, and it's different than what I was told at the hospital, and so I'm wondering what you think? And they described doing something similar with other parents that they knew personally whose children were going through cancer therapy, with friends, with family members, and sort of trying to reconcile the conflict there.

And then they also just describe some characteristics of what they considered to be trustworthy online information or information they'd be more willing to act on. and that was the information firsthand, so was the person sharing it, describing something that happened to a friend of a friend of a friend? Or were they saying, "This is what I was told. This is what my child experienced during therapy"?

And then second, they looked for how detailed it was. So they weren't as trusting of vague information; how up to date it was, so they didn't necessarily trust something that had happened to someone 20 years before. They recognized that things are changing.

And then they looked for convergence. So if they saw the same piece of information in several different places shared by several different people, they were more likely to find it trustworthy. And they used all of those, ultimately, to come to a decision about which piece of information to trust and how to go forward if they were trying to make a decision, for instance.

Host Amber Smith: Did you come across anything that was found on social media that was potentially or could be harmful to someone if they acted on it?

Amy Caruso Brown, MD: So, definitely yes. People described being told things that they ultimately decided were untrue, were factually untrue.

For instance, suggesting that a particular treatment wouldn't work and was too dangerous and that they shouldn't do it. And then doing further research and ultimately deciding, no, actually that's the standard of care, that's the best way forward. That's how we're going to get our child to a cure and to a long life after this diagnosis.

So I think about those pieces of information. If social media increases mistrust in medicine and encourages more parents to, say, reject evidence-based medicine or reject what we know does work for children with curable cancers, then that would very much be a harm. I didn't actually find that any of the parents in this study described actually making the choice to, say, reject conventional treatment because of what they read.

What I did find is that a lot of parents described experiencing some psychological or emotional harm from what they read. they second-guessed themselves. They second-guessed their doctors. They spent a lot of time and energy checking that information, feeling pressure to do more research or get second opinions. One parent called it going down the rabbit hole and described a many-month journey that ended when her partner said, "You've got to stop. Youcan't read online anymore. You need to take a break from that." And I think those are real harms, too.

Host Amber Smith: So the online thing certainly makes information available much more readily.

But if you were to remove that technology, do you think that 50 years ago there was a similar clash between what doctors were telling patients and then what patients were learning, or patients' parents, in the town square or across the backyard fence with their neighbor?

Amy Caruso Brown, MD: Yes and no. I mean, I think, overall in medicine as information has become more widely available, patients are much more educated now. They're more empowered to seek out information and educate themselves. They're more willing to challenge their doctors. That model of shared decision making, that we all sort of think is the best way to go.

It's just much more common that we're, we're making decisions jointly with our patients now, not just telling them what to do, but I think in particular in the setting of pediatric oncology, childhood cancer is a rare disease. And as with other rare diseases, 50 years ago, most families might never have encountered someone else with the same diagnosis, so they wouldn't have had a chance to get access to other information. Their gateway was going to be their physician.

And the last interesting piece of that question is just how much more information there is in general. Fifty years ago, there was less information on the doctor's side, too. We understood less about these diseases. There were fewer studies. And now, our patients not only have access to information on social media, they have access to the same information we have on sites like Google Scholar, where they can type in search terms just the way a clinician or researcher would, and see some of the same articles that we are using to help inform our decision making.

Host Amber Smith: Have you, as a pediatric oncologist, faced situations where parents brought something to you that they found on social media and asked you about it?

Amy Caruso Brown, MD: Yeah, I definitely have, and I think anyone who even remotely keeps the door open for parents to bring that information does. I think probably the most common one relates to complimentary and alternative medicine, that parents hear about things like high-dose vitamin C, about medical marijuana, online, and they come back and ask us about that.

Sometimes they'll hear from other people about large centers. Some centers advertise quite a bit, or they'll just hear from a friend of a friend, "Oh, my child was treated here." So they'll be coming back to ask it. It's not exactly a conflict, but they'll be coming to back to ask for not even a second opinion sometimes, but a third or fourth opinion that probably isn't necessary and can be a pretty big burden on the family.

Just because someone online is saying, "This hospital was great; you need to go there too," you need to check what they're saying. And I think balancing that ... sort of, this information is empowering, but it can also be burdensome. That's what I'm always trying to do.

Host Amber Smith: What do you say about social media to the parents of newly diagnosed children?

Is there any advice you give them before they go home and start typing into the computer?

Amy Caruso Brown, MD: I try to anticipate, so one of the things I like to do in all new diagnosis talks or when I'm getting to know a new family, is understand something about how they like to receive information and make decisions.

Some people like a lot of information. Some people like a little information and a lot of direction. Some people like to read. When we did this study, TikTok was not even a thing, where now TikTok is a huge source of information, and some people really like that. They like the visual. So, trying to figure out how does this family want to be educated, supported in their journey, make their decisions, because then I can sort of anticipate what they might run into, the biggest thing, I think, is that being cautious and being aware that it is a rabbit hole, and you can fall down it.

And that your friends and family have good intentions, but they can sometimes create additional stress. Sometimes it helps families to know what you can ask people to "not" (do): You cannot Google, and you can ask people to not Google. You can ask your friends and family, "Please don't tell me all about everything you're finding online right now."

So, I tell them to go slow, with what they look at. Depending on what the disease is, sometimes I know what will, and this came up in our study, actually, as a recommendation from parents saying doctors should know what's out there. So, depending on what we think it might be, I know what will happen if they Google. Some of the more tailored social media sites, even Google, is tailored to what we look for, but Facebook, it's hard for me to anticipate what might come up because it'll be skewed by their networks.

But I know what they're going to look at. For instance, if we're thinking it's leukemia, but we don't know which type, the two types have very different prognoses that you would find in a search engine and very different treatments. And so sometimes I can tell the family, we don't know which one it is. If you type it in, you're going to find vastly different information depending on which one you look at. So what I would suggest is don't look it up right now. You can look it up tomorrow after I tell you exactly what it is so that you're getting tailored information.

And then I also usually make some recommendations of specific sites to check out that have good information, evidence-based information, information written, in sort of more of a layperson's way. And finally, I tell families that I'm happy to look at anything they find with them, that if something's out there and they want to talk about it, and this really came up from the recommendations from parents in our studies, is I want them to be open with me.

And I, in turn, will be honest with them about what we know and what we don't know. Because sometimes they find information that is really, "outside the scope of Western medicine," is how I would describe it. I can't tell them whether it works or not. I can tell them, and I can work with my pharmacist, to tell them whether it's safe or whether it's known to interact with chemo (chemotherapy). But I can't necessarily say that that Ayurvedic medicine (traditional medicine of India) that they found from this connection with this person and this other family, that's not my practice. That's not my expertise. I can't say whether it works or whether it doesn't work.

The other piece of advice that I give, not usually right at the time of new diagnosis, because it's overwhelming, but a little bit later, is about thinking about how much of the family's journey they want to share online, how they're going to share it, and then in the context of that decision, thinking about their child's privacy. We don't have a lot of data on this yet, but I think someday we will be able to study the experiences of children who are now adults whose parents blogged or posted extensively online about them. And there has been some real ethical criticism and some pushback, saying children have a right to privacy. And as much as this is a family journey, and I think parents need as much support as they can get, it needs to come with that caveat of not putting anything out there that your child might not want out there later, or that might come back to haunt them someday when they're adults.

Host Amber Smith: Do you think there's value though, in parents of kids with cancer communicating with one another, comparing notes?

Amy Caruso Brown, MD: Absolutely. Yeah. 150%. I think one of my favorite quotes from this study was, the parents said the amount of love and support that she encountered online from other families was just unmatched, the way people could be there for each other because of what they were going through. And the same parent noted that people are in different places in their journeys, and so they have experience to share. They also may have a really different journey than the parent who is going online looking for support, and she thought that was a good thing to remember. And also there's a lot of practical everyday challenges that people encounter that we have some advice on. It's not that we don't think about these sort of practical things. Like, I can tell you how to take a shower with a port (an implanted medical device), how to easily cover up your central line (an IV line inserted into a vein) at home. but sometimes there's safe feeding challenges or behavioral challenges. Children who are taking steroids for leukemia can get really irritable. Toddlers can have major temper tantrums and sometimes other families will have advice that just would not have occurred to me of, "Hey, this worked with our 3-year-old, you might want to try it with yours."

And I think all of that is just invaluable and helps families feel less alone, less isolated and ultimately more empowered to take care of their children.

Host Amber Smith: Your paper says that parents offered a bunch of recommendations for how pediatricians might approach discussing parental social media use. You already mentioned that someone suggested physicians need to know what's out there.

Amy Caruso Brown, MD: Uh-huh.

Host Amber Smith: Are there some other things that you found were good ideas?

Amy Caruso Brown, MD: Yeah, I mentioned that being open, so parents described ways in which their providers, their physicians, reacted when they brought information online, and some of those ways really promoted trust between the families and the physicians. And part of that was that openness, of being open to families bringing questions from social media.

And then on the converse side, some families described feeling very judged, or the physician just saying, "Well, you shouldn't go online," and having the conversation shut down. So that openness and the honesty about what we know and don't know was a big one. Educating ourselves, going online, we mentioned.

I really liked that we ended up with eight recommendations altogether. No. 6 was "Know that it's OK if we sometimes prefer to look up what you said, rather than asking you to explain it immediately. This can help us exercise some control in a situation where we often feel powerless." And I think that's a really important point, that it's not necessarily reflective of mistrust when a family wants to do some research on their own or wants to go online.

They also mentioned treating every family as unique, that they want to feel like when they talk to us as physicians, we take some of the burden away of feeling like what they find when they go online, which is that maybe they're actually lucky in the world of pediatric oncology, that they don't have the worst-prognosis diagnosis out there. And so they asked for physicians to take some of that burden away.

And then, finally, they recommended hospitals having more formal guides and education processes and maybe even some classes, on social media literacy or media literacy and how to go online. And I think that actually, I feel like, in talking to my son, who's 11, that's becoming more prevalent in schools now, too, of teaching kids how do you navigate all the information and misinformation that's out there? So I'm thinking maybe in another generation, or in 10 or 20 years, we won't necessarily see that families feel the need for that as much.

Host Amber Smith: Are there other ways? I mean, what do you recommend besides social media, if a family really wants to learn about the condition and the options available? Are there places online that you can point them that are not social media, but will have good information?

Amy Caruso Brown, MD: Yeah, there's some.

Some of the children's hospitals, and even some general hospitals or medical schools, have pretty good websites that have good information.

Sometimes it's very generic, in a way that can be misleading. There's not really any one that I think is fantastic for all diseases, but I keep in mind ones that I've seen that are good for specific diseases. Some of our professional societies make handouts -- we have paper copies, but they're also available online -- for instance, that go through how different drugs for cancer treatment work and what their side effects are, how they're administered, which is important to know.

And then lots of hospitals have a nurse navigator or a nurse educator role. So in addition to the part of all of our jobs that is doing education with families, many hospitals have someone whose job is specifically to do some of that education and to make sure that families feel like they have all the information that they need.

Host Amber Smith: Dr. Caruso Brown, thank you so much for taking the time to tell us about your research.

Amy Caruso Brown, MD: You're welcome. It was a pleasure talking with you.

Host Amber Smith: My guest has been Dr. Amy Caruso Brown. She's an associate professor of bioethics and humanities at Upstate, and she's a pediatrician who specializes in hematology/oncology.

"The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe.

Find our archive of previous episodes at upstate.edu/informed.

This is your host, Amber Smith, thanking you for listening.