Social Media’s Effect on Informed Decision Making in Cancer Treatment With Nina Morena, MA, and Ari Meguerditchian, MD

Welcome to Oncology Data Advisor^®, a digital resource for the multidisciplinary cancer team. In this podcast episode, Nina Morena, MA, PhD Candidate at McGill University, and Ari Meguerditchian, MD, Surgical Oncologist at McGill University Health Center, sit down to talk about Ms. Morena's thesis topic and research, How reliable are post-mastectomy breast reconstruction videos on YouTube?, which she presented at the American Society of Clinical Oncology (ASCO) Annual Meeting. Her presentation encompasses the effects of social media platforms, specifically YouTube, on breast cancer patients.  

Oncology Data Advisor: Thank you for joining me today. Would you both like to introduce yourselves, what you do, and your research?

Nina Morena, MA, PhD Candidate: Hi, my name is Nina Morena. I'm a PhD Candidate in Communication Studies at McGill University, and my research is about the social media practices of young people with metastatic breast cancer.

Ari Meguerditchian, MD: I'm Ari Meguerditchian. I am a Surgical Oncologist at the McGill University Health Center and the Research Center Director at St. Mary's Hospital. I'm a Breast-Specialized Surgical Oncologist and Health Services Researcher looking at how we can optimize the quality of care for cancer patients.

Oncology Data Advisor: Incredible. Thank you both so much again for your time today and for your research. I'm really excited to talk to you guys about it and learn more and share it with our audience. So, first question I had for you is, could you give us an overview of your study and what you found?

Ms. Morena: Definitely. So, this project is about YouTube videos about post-mastectomy breast reconstruction, or PMBR. Our goals with this project were to evaluate the information and quality of the videos and then to collect themes that come up in the videos. Overall, we found that videos were fairly understandable but that they were of low informational quality. We also found that videos were very highly sponsored, mostly by institutions, and that there was a very wide range of themes being discussed in them.

Dr. Meguerditchian: The importance of this study is really connected to the context in which we're working. When you're in the clinics, when you're talking to patients, when you're talking to them, you know that they're interacting with social media, with YouTube, et cetera, et cetera. And yet there's very little knowledge on how that works, on the accuracy of information, on what YouTube does provide them and whether that's safe or not safe. So, this project is contributing to our understanding in that area, and it also helps us craft discussions on themes that are important to patients, obviously because they're consuming these videos but tend to be neglected in the more traditional standard clinical interaction. What's unique about it here is that while it might be a bit easier to take a decision for surgery for the patient because their life depends on it, with the reconstruction part, you don't necessarily need a reconstruction to survive, to live through cancer. It becomes even more important to get a better understanding of what are the factors that influence patient decisions when the immediate threat of the death is not there.

Oncology Data Advisor: Next question I had for you guys was, what was the genesis of the study and what inspired you both to conduct the study in the first place?

Ms. Morena: This is a great question. So, I've always been really interested in the effect that social media can have on people's decisions and specifically health care decisions. And I think that for this project in particular—looking at YouTube—there's such an emphasis on the visual and on storytelling. I thought that especially looking at mastectomy, where there's often this "before and after" or there's always this visual progress or proof of the surgery. YouTube just felt that it's naturally where we would find this. I also think that just the format, the storytelling, so many of the videos we saw were patient testimonials, so it really just made sense that that's where it would happen. We're really excited about it.

Dr. Meguerditchian: I immediately bought in when Nina proposed that we look at this because it is now the reality, as I was explaining a little earlier, of our clinical encounters with patients. It's a three-way discussion with the patient and with the social media that they're consulting because also we see the impact of potentially harmful decisions they're taking. And whether you like it or not, these platforms, these media, are here to stay. So, it's important for us to acknowledge that and acquire knowledge about it instead of living in denial.

Oncology Data Advisor: Definitely. So, piggybacking off what you were starting to mention, would you say that these videos are overall harmful or potentially helpful for patients?

Dr. Meguerditchian: I think it's not a black-and-white, clear-cut equation. There's this entire array of grays on the positive side, and I'll let Nina explain this more because it's something that she's been working on, on her PhD thesis, this notion of community.

Ms. Morena: Right. So, I think that—exactly—it's not necessarily that they're helpful or harmful, but it's that there are aspects of them that are helpful and then potentially harmful depending on how you look at it. Oftentimes the more positive or helpful aspects are a sense of community, a sense of connection with other people. It could be really therapeutic to watch or to just see that there are people like you out there. And in that sense, they're definitely helpful. I would say that they can become harmful when they might push you to make a certain decision that is not fully informed. So, I think it's about approaching videos with the sense that this is made for a certain audience and that might not necessarily be me. Taking it too seriously is where it could potentially become harmful. But that's also paired with media literacy at the same time, having a sense of where this is coming from and who it's meant for.

Dr. Meguerditchian: For me as a clinician, the added educational value, I would say, is to realize that in order to achieve the patients' need for understandability, I have to modulate and adapt how I speak and what I say to my patients, because the alternative, which may potentially be harmful, is very clear, very easily understandable—number one. Number two, as I mentioned, the themes, when you're in a clinical encounter with a patient, you go through a list of topics. But learning about these YouTube videos teaches us that there's a whole other list of topics of things that are important to patients. So, I think being aware of these things makes you a better clinician. That's why it's important to look at these from a scientific approach.

Oncology Data Advisor: Next question I have for you guys stays in the realm of what we were just talking about. What can clinicians do to better inform and educate their patients about PMBR to prevent potentially viewing biased or toxic YouTube videos or creating those uninformed opinions that you mentioned earlier?

Ms. Morena: I can start and then I think you might want to add. So, I think that it comes with acknowledging that patients are looking at this information, whether you suggest that they should or not. It's always going to be there. And I also think that there's—back to media literacy—learning to recognize sponsorships or ads or when something is clearly a promotion. I say "clearly," but it might not be clear. So, it's learning to recognize that. I think just even the knowledge that something is paid for by a particular company is really useful.

Dr. Meguerditchian: I'll add on the point that the education piece will be very important. These are not going to go away. Social media, YouTube, these platforms, they're not going away. So, there's no point in playing the ostrich. Perhaps the best thing to do is to create simple, easy-to-use tools so that patients can rapidly assess if what they're viewing is of good quality or if it's of poor quality and potentially harmful for them. And for us on the clinical side is to be aware of what's going on and to be aware of what are the needs, what are the gaps that these YouTube videos are potentially addressing—coming back to the themes that tend to be underexplored during the clinic visits and coming back also to this notion of making it understandable.

Ms. Morena: It's definitely, too, asking patients what they've been reading, bringing it into the conversation, and being open-minded about it too, and having it as part of everything and not something that the patient feels like they shouldn't bring up.

Dr. Meguerditchian: Absolutely. I mean, I've said this before, Nina has heard me. Since Nina has started working on this, I've changed the way I interact with my patients. I very openly say, "So, what did Google tell you? What did YouTube tell you? What did you find out on Facebook about breast cancer? Let's talk about it." I think it provides for a much more informed conversation when you open up with that.

Oncology Data Advisor: Definitely. That's so incredible to hear how even your own research has affected you in your practice. That's really awesome. Is there anything current right now, like resources that your patients could use to become better informed of the whole process of PMBR and to create their own opinion, that you would recommend?

Ms. Morena: So, I wouldn't be well positioned to name a particular resource but what I would suggest is always starting with the hospital and seeing what they have been recommending and going from that point.

Dr. Meguerditchian: I think most integrated cancer centers now have nurse navigators and information specialists to accompany the patients. That being said, I think we also have to be realistic. By the time they come to us for that first consultation, they've already been on social media: on Facebook, Instagram, YouTube. So, the good and the bad have already taken place in terms of being exposed to what's out there. So after that is how do you support them in becoming autonomous and assessing what's good or not? How do you put in place the structures so there's a reference person or reference resource when they need to check and validate information? But these interactions in the real world, with these platforms, have already happened by the time they come to us for that initial consultation.

Oncology Data Advisor: Final question that I have for you is, throughout this study and everything you learned, do you now have a plan for future research in this study or expanding into other areas to study the social media effects in health care overall?

Ms. Morena: Yes. So, I can talk about some recent work and then future plans. We have a paper that just came out about a month ago that was about reviews on RateMDs, specifically for medical oncologists. And in that project, we were looking at whether patients were reviewing things that were actually physician-standard competencies. We found that they were, and it was mainly qualities of physicians that were patient-facing—so, compassion and levels of knowledge. That and we have another project that was also a YouTube study. And that study was looking specifically at the experiences of young people with metastatic breast cancer. In that study we found that, similar to this one, the understandability was pretty high but that the information quality was relatively low. That also goes into my overall PhD topic, which is social media in stage IV breast cancer. That one is obviously not done yet but it's going to be looking at their overall information practices, online literacies, and such.

Dr. Meguerditchian: I think in the continuation of all that's described by Nina, the areas where I'm going to be expanding have to do with distinct populations. First, the younger cancer patients that are born with an iPhone in their hand, so they are very digitally connected. And secondly, populations that could be described as vulnerable because of, for example, their immigrant status, linguistic, ethnic, religious minorities that tend to be underserved or somewhat excluded from mainstream care, that may not have access readily to quality information and that rely heavily on these platforms. So, what's going on there and how does that impact the quality and the experience of care? So, those are two populations that are, in my opinion, very interesting to look at and that we're going to be branching out in.

Oncology Data Advisor: Those all sound like incredible topics that I think people need to listen to and understand. We are really excited to hear more about your research and hopefully follow up with you in the future. And those were all the questions I had for you guys today. At this moment, I would like if you wanted to add on any extra information or anything you would just like to speak on. Is there anything?

Dr. Meguerditchian: No, I think we've addressed the issues that are important. It's just important to be sensitive and realize the fact that when you're talking to your patient, they've already had this so-called conversation with what's out there. So, it is in fact a triangular-type of conversation. So, we're just trying to put the signs around that.

Oncology Data Advisor: Definitely. Thank you, again, both for your research and your passion on this topic. And again, thank you for your time today.

Ms. Morena: Thank you so much.

Dr. Meguerditchian: Thank you.

About Ms. Morena and Dr. Meguerditchian

Nina Morena, MA, is a PhD Candidate in Communication Studies at McGill University. Her thesis and research revolve around the social media practices and effects on breast cancer patients. Ms. Morena is passionate about improving communication between patients and clinicians for a better standard of care and quality of life.

Ari Meguerditchian is a Breast-Specialized Surgical Oncologist and Health Services Researcher at the McGill University Health Center. As well, he is the Research Center Director at St. Mary's Hospital. Dr. Meguerditchian's research revolves around developing new methods and improving quality of care for cancer patients.

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Transcript edited for clarity. Any views expressed above the speaker's own and do not necessarily reflect those of Oncology Data Advisor.