Social Media for People With Cancer
This podcast was originally published by Cancer.net with Merry Jennifer Markham, MD, and Danielle Gentile, PhD, on March 5, 2019, here.
Dr. Merry Jennifer Markham and Dr. Danielle Gentile recently published a study in the Journal of Oncology Practice that describes potential benefits and drawbacks of people with cancer using social media. Today, we’re going to discuss with them some of the findings from their study, as well as what people with cancer should know about using social media and how it can provide support.
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Monika Sharda: Hello. I’m Monika Sharda, an editor on the Cancer.Net team and your host for today’s podcast. In this episode, I will be talking with two guests about how cancer patients use social media. Our first guest, Dr. Merry Jennifer Markham is a hematologist at the University of Florida in Gainesville. Welcome, Dr. Markham.
Dr. Markham: Hi. Good morning. Thanks for having me.
Monika Sharda: We also have with us Dr. Danielle Gentile, who is a researcher at Levine Cancer Institute in Charlotte, North Carolina. Hi Dr. Gentile.
Dr. Gentile: Hi Monika. Thank you for having us this morning.
Monika Sharda: My pleasure. Drs. Markham and Gentile recently published a study in the Journal of Oncology Practice that describes potential benefits and drawbacks of people with cancer using social media. Today, I’m going to discuss with them some of the findings from their study, as well as what people with cancer should know about using social media and how it can provide support.
First off, I want to know what sparked your interest in studying social media and its use for people with cancer. Dr. Markham, let’s start with you.
Dr. Markham: Sure. So I have had an interest in social media for several years. And some of that stems from my own personal and professional use of social media, primarily platforms like Twitter. And one thing that I’ve noticed is that I’ve connected on Twitter with a lot of patient advocates and colleagues and sometimes people who identify themselves as patients, as well. And there’s a lot of searching for information that happens, I think, on social media. So that has really stemmed my interest in exploring it further as a potential tool for patients, as well as researchers and oncologists and other health professionals, to take advantage of what’s out there.
Monika Sharda: And what about you, Dr. Gentile?
Dr. Gentile: I’ll echo many of the things that Dr. Markham shared. And there’s ways to find so much information through social media, things that a person may not even be directly seeking. They can come across things indirectly and learn that way. So it’s quite interesting to see how people are able to make connections across the country and across the world with people who are in similar situations that they are. And social media is a way to gain some social support in ways that may not be possible in person. So if a person is not feeling well from their cancer diagnosis or treatments, they can reach out online. And through Twitter or Facebook, they’re able to meet others who can share in the experience with them.
Monika Sharda: So what I took away from your study is that social media can sort of be a double-edged sword. There’s potential benefits for patients, but then there are also potential drawbacks. So let’s start by talking about some of the pros. How can social media be helpful to patients?
Dr. Gentile: So there’s a few ways that patients can use social media to their benefit. And one is that it’s great for engagement and empowerment. So it provides a platform for patients to talk about their diagnoses, to search for information, digest what is happening in the world of cancer research as well. And through all of that information and connection with others, it can provide psychosocial support too. So those who are able to disclose some of their thoughts and their feelings and meet with others who share similar stories and are in the same boat, it can be helpful for them to make those connections.
Dr. Markham: I think that that source of support is really one of the invaluable pros to social media. I am a medical oncologist and see patients who have gynecologic cancers. And we live in an area where there’s not a lot of in-person access to support groups. I am never offended when my patients come to me with things that they’ve read on the internet because, unfortunately, it really is a resource that a lot of people rely on. And I think that when my patients are able to connect on social media to other patients with similar diagnoses or similar health experiences, it really allows me to have a better conversation with that patient in the exam room. She can bring me information about what she’s read or what she’s heard from a friend of hers across the country. And then we can have a conversation and I can take care of her better knowing what she knows.
Dr. Gentile: So another pro coming from me from a research perspective is that social media can be a valuable recruitment tool for researchers who are looking for demographics of patients that are pretty specific. So if you imagine a rare cancer diagnosis, it can be hard to find those patients in any small geographic area. But by using social media, those groups can cluster online. So it could be a Facebook support group for a certain diagnosis and a researcher could post on that group and ask if anyone is interested in a potential research study or a trial. And so it’s a way of connecting patients to opportunities to participate in research that their home oncologist and their support team may not be aware of.
Monika Sharda: Absolutely. And what are some of the cons? What should patients be cautious about when using social media?
Dr. Markham: I think one of the real risks of social media is misinformation. It’s very easy for false information or altered information to spread widely on social media, either Twitter or Facebook or otherwise. And sometimes it’s hard for people to distinguish what’s the good information, what’s a quality piece of research, or a true statement about health that can be trusted, versus what is myth and what’s not to be trusted. So distinguishing between good information and reliable health information is certainly one of the risks that I do worry about with, not just patients, but with their caregivers, and, truthfully, health professionals as well.
c And another, with all of that information that patients can find online, is they’re trying to decipher what’s good information, what’s misinformation, and what to act on. It can result in what we call information overload. And that’s when a person has gathered so much information that they become overwhelmed by the amount of the information and they’re not sure how to act on it. So it can lead to this feeling of paralysis or being stuck. And something that we recommend for that is always talking with the clinician. Like Dr. Markham said, she’s not offended when her patients bring her information they’ve learned online. And that’s one of the best resources to determine if information is worthy or not.
And I’ll share another potential con for social media and that is privacy concerns. So pretty much anything that goes onto the internet is for public use. And folks will think about their privacy filters. Do they want only their connections to see it? Do they want it to be widely, publicly available? But one can never be sure, even with those privacy filters, that their information won’t go somewhere they don’t intend it to. So if a person posts on Twitter in a private group thing that they have a certain diagnosis, it can never be for certain that someone in their daily social connections might see that. So anything a person posts online, I would advise make sure that’s something you feel comfortable with everyone knowing.
Monika Sharda: Going back to the idea of misinformation for a minute, you mentioned one way for it to help patients differentiate between what’s worthy information and isn’t is, of course, to talk with your oncologist about it. Talk with your healthcare team. Are there any other tips you can provide patients with how they can differentiate between reliable and unreliable information?
Dr. Markham: So I think looking for the source of information can be helpful. Information that’s put out by American Cancer Society or by ASCO or Cancer.Net, for example, is vetted by clinicians and physicians who, I think, lend some support to that information being trustworthy. There are other sources, such as the National Cancer Institute that shares information regularly on social media. I think it’s when there’s an article in a non-medical journal or not one of these professional organizations that is sometimes hard to see today whether it’s true or not true. And I think in those situations, it really is advisable for patients to take that information to their doctor, to ask more questions about it. I’ve encouraged my patients to go to certain resources online for information. And I’ve also encouraged them to bring me information that they want to know more about. And it’s not infrequent that I have my patients come to me with things that they’ve seen online, whether on social media or otherwise, and it allows us to have a good conversation about what’s true and what’s myth.
Dr. Gentile: It can also be important to think, “What is the motivation behind whomever has posted the certain piece of information?” So if it’s a reliable source, like ASCO or Dr. Markham is posting it, she is a hematologist, she is likely doing that because she wants to share the information for educational purposes and to help the lives of her patients. But there are plenty on social media who have profit motives for sharing information. So it might be some type of miracle cure where taking this product would completely take care of the cancer. And something my mom told me, is true in this situation: if it sounds too good to be true, it is. So be cautious and think about why a person might post something on social media.
Monika Sharda: Those are some really great tips. And Dr. Markham, I think it’s really great how you encourage your patients to talk with you about what they’ve read, what they’ve seen on social media and really encourage that conversation instead of them trying to figure out on their own whether the information that they’re seeing is worthy, is reliable. What would you say is the most effective way for patients to use social media to communicate?
Dr. Markham: So the most effective way, that’s a bit of a hard question because I think there’s probably multiple ways for patients to use social media. I think one reason that I like Facebook for health information, actually, is because there are a variety of groups that are closed and private that patients may discover for health information and, primarily, for support. So I think those are sometimes opportunities. The challenge of those, of course, is is there reliable information being shared. Some groups have healthcare moderators within them and some do not. So that is one of the risks of participating in a group. I think if a patient feels uncomfortable or overwhelmed, they should remove themselves from that situation.
I think on Twitter, there’s an opportunity to participate around hashtags. Hashtags are terms that you can plug into Twitter using the hashtag or pound sign with a phrase behind it, such as #breastcancer. And that is a good way of sort of filtering out information that’s targeted to that type of health problem. And there’s a lot of communities, actually, in the Twitter space built around these hashtags for healthcare where there are routine chats that may happen. Breast cancer actually has a good advocacy group on Twitter centered around the #bcsm, which stands for breast cancer social media. And there are physicians within that community and patient advocates and patients themselves. And it’s, I think, a good starting point for a patient who may be on Twitter and wants to connect with others who have similar interests or similar desires to connect.
Dr. Gentile: And I think it’s also important for any patient who wants to access social media in relation to their cancer diagnosis to spend some time before they enter these platforms and ask themselves, “What are they hoping to get out of the experience?” Is their primary motivation to get social support and meet others in social support groups, or is it looking for new, reliable information? Is it a mix of the two? And then, again, checking in with oneself periodically and asking, “Am I getting what I need, what I was intending to get?” For example, Dr. Markham was saying that if a person becomes uncomfortable or they find the situation overwhelming within social media, fielding many messages, then they can just remove themselves. And one should really go at their own pace and do what makes them feel comfortable and beneficial. There’s no real obligation to respond to folks if you’re not finding it to be beneficial.
Monika Sharda: For someone that’s not too comfortable with social media or has trouble finding relevant hashtags or Facebook groups, do you have any tips for them on how they can seek out these groups and what the relevant hashtags are for them?
Dr. Gentile: Sure. So I’d recommend that a patient get started with some platforms that they know are reliable, valid, good information sources. So, for example, Dr. Markham mentioned the #bcsm, breast cancer social media. And just starting with one hashtag or one support group on Facebook can lead a person down the line to other places to explore. So starting small and then branching out, I think, would be helpful for most cancer patients.
Dr. Markham: ASCO has some good resources, both for patients and for caregivers, I believe. There’s something called Social Media 101 for Patients that ASCO has published. So that’s a good starting point for people who may want to jump into social media period. Also, I think patients who are interested in finding groups may be able to reach out to their oncologist or other physicians to inquire if those physicians know of reputable groups that they could join.
What I find, though, is that a lot of the networking that my patients experience in social media has come from their online sort of word of mouth, which is a little harder to know about. Our social worker in my own clinic is sort of compiling a list of places where patients tend to congregate online so that she can point other patients in the right direction. But I think we still have a lot of work to do in this area to help really guide our patients well.
Monika Sharda: And that actually leads me to my next and final question. I was going to ask you to share some resources for patients to learn more about using social media safely and effectively. So you’ve already mentioned ASCO and the resources they have and also, talking to your healthcare team and your oncologist. Do you have any other resources that you can share?
Dr. Gentile: So I think those are probably two of the most important. I know that I have had patients who have reached out to organizations on social media, such as American Cancer Society and, probably, Cancer.Net may have had this experience as well, asking for information from those groups on who to recommend and how to approach things. So I think that Cancer.Net certainly has lots of good resources. But, really, I think ultimately, just conferring with a physician at the end of the day, to make sure that the space that is being found and using social media in a safe way as a patient, can be a discussion with the physician and patient together.
Monika Sharda: Right. Well, that’s all of the questions I have. Is there anything that, perhaps, we didn’t touch on already that you’d like to talk about?
Dr. Gentile: I’d like to say that it’s going to be different for every patient or every loved one who is caring for someone with cancer, when it comes to social media. And to feel okay with taking it at your own pace. And if you find that you have a piece of information that you are unsure about, the take-home message is to share that with your healthcare team and get that checked out. And to not make big decisions on how you’re going to care for yourself or your loved one solely based on a piece of information from social media.
Dr. Markham: I think that’s an excellent point. And the only other thing I would add is that social media can be scary for those who are just diving in, and I don’t think it necessarily has to be. It’s just a matter of taking it slow, at your own pace, as Dr. Gentile said. And just testing the waters.
Monika Sharda: That’s really great advice. Drs. Markham and Gentile, you’ve shared a lot of great tips with our listeners on using social media and provided additional resources where they can learn more about the topic. It’s been a pleasure having you on this podcast. Thank you so much for joining us today.
Dr. Markham: Thank you so much for having us.
Dr. Gentile: It’s been a great pleasure for me too.
ASCO: Thank you, Dr. Markham and Dr. Gentile. Find more resources on using social media at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.
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