Working In Oncology
Working In Oncology

Episode · 1 year ago

How to Use Social Media to Take Back the Narrative of Health w/ Dr. Don Dizon


“I don't have time to do this.”

“I don’t want to risk patient privacy.”

“I’m concerned about the legal issues.”

When asked why they aren’t active on social media, oncology professionals often have objections like these.

But Dr. Don Dizon thinks that ignoring social media simply isn’t an option anymore. And he’s taking huge steps to remedy the disconnect.

Dr. Don Dizon is a Professor of Medicine at Brown University and the Director of the Breast and Pelvic Malignancies Program at Lifespan Cancer Institute. He also formed a crowdsourced organization called Collaboration for Outcomes Using Social Media in Oncology (COSMO).

Some might call him a social media “power user” — and for good reason. He’s active on multiple platforms, and he’s on a mission to highlight the dangers of misinformation online, and how healthcare professionals can help change those narratives and sculpt conversations around health and research.

And of course, there are the wonderful benefits of a social media presence, like personal branding, thought leadership, and networking.

Don’t miss this one!

Here are the show highlights:

- One of the most crucial lessons to take away from this whole conversation (7:10)

- Join the fight against misinformation and false narratives (16:31)

- Here’s the first step to finding the right social media platform and getting started (24:40)

- There’s a niche for everything. Learn how to filter down tweets to find content you’re interested in (26:35)

- Why you need more “Twiends” (Twitter friends!) (30:35)

Stay connected with Working in Oncology on Apple Podcasts, Spotify, or our podcast website.

You're listening to working in oncology, a podcast and video show that spotlights oncology practice staff and industry influencers who work behind the scenes to shape the future of oncology. The more knowledge the oncology community shares with each other, the more we all grow. Let's get into the show. Welcome to working in oncology. I'm your cohost, Alisia Evans, and I'm here today with Dr Don Di'son, professor of Medicine at Brown University. Morning. Good Morning, Dr Di'son. Thank you so much for joining us today. Happy to be here. Welcome and I'm excited for our conversation. I think a lot of our listeners dabble in social media. They use facebook and twitter to keep up with their family and friends, maybe their crush from high school, but they don't really think of it as something to be used for patient care, and I think you're going to be able to speak a little bit on that today. But before we get into the show, can you tell our viewers a little bit about you, your background and what you do? Sure, I am a medical ecologist. I've been practicing for the better part of twenty years. I trained at stone cuttering for Fellowship and then developed a specialty in Brust and pelvic malignancies. Currently I'm the director of the breast and Pelvic Malignancies Program at Lifespan Cancer Institute, which is here in Providence, Rhode Island, and on that sort of rubric, I treat breast cancers like ovarian, cervix uterine cancers, and I also treat soft tissue Sarcoma's. Here I'm a professor of medicine at Brown University and head the community outreach and engagement program at the Cancer Center at Brown University. Awesome, sounds like you have a wide rage of experience.

I said. Also say I'm a help form this group and I call it a a crowdsourced organization, but it's called the collaboration for outcomes using social media in oncology. She's just had our first meeting. Oh great, sounds really interesting. So the collaboration for can you repeat that please? Sure, it's the collaboration for outcomes using social media in oncology. That's a very interesting topic that I'd love to get into. I think the the little name for it is eve the better. It's called COSMO Cosmo, it's catchy, it's catchy. I like it. Yes, so tell me a little bit about cause noo. So using social media to improve patient outcomes, and how do you envision that? Well, it's actually not to improve patient outcomes specifically. The whole goal that we had was to who make the case that stakeholders, especially within the cancer space, should engage with the community at large, and in terms of social media, I mean a worldwide community and conversations that are happening, that it is worthwhile to do this, and we are. We sort of form together and we wrote papers together before we actually named it something, but, you know, best practice, providing guidance on how to do it, sort of where and should the interface between professional use and personal use, like you just mentioned, comes into play, and where education and engagement with people directly not under your care, where that line is and where for people who are also under your care, and how to sort of traverse that that ground as well. That's a very interesting topic and something that needs to be explored because there's some probablytes of ethical questions in there and guidelines it.

You want to stay as practices, for sure. Yeah, absolutely. So this group was formed and you've recently had a conference. Yes, we had our first it was supposed to be live but during covid it became a virtual meeting. We just had it on April, eighth and ninth and excellent, excellent. And so what are some key takeaways? You think that at the practice level, what are some things that we can do every day to start because using social media more well, I think one of the biggest things that was mentioned during the conference and we had we had quite a, you know, a diverse panel. We had, you know, physicians, we had a physician, advanced practice providers, we had patients and we had patient advocates on the panel. We had researchers on those panels as well, and I think one of the things that struck me was that there should be no no one should be forced to engage on social media. So a lot of a lot of best practices are about listening, you know, joining social media and just watching a conversation take place. And someone actually made the point there's no use in joining if you're not going to engage, and so much of engagement is listening to other viewpoints. There was also this point about how to avoid an echo chamber and someone on our panel who's also a founder out in Utangan, who is a CO founder of a social media analytics come platform called Simpler, made the point that an echo chamber is defined by the lack of diversity in the voices. I thought that was really really crystal clear. Another point that came out was sort of the patient and the doctor perspectives and how you... need to respect that on social media. So this whole notion of, quote, friending patients that you are personally caring for should not be or should be done with great caution, because it is not a platform to discuss individual situations and it is not a platform to provide medical advice. And I think that is one of the the biggest and most crucial lessons that people should take away from this is that there is a way to professionally use social media and respect the relationships and the you know, your institutional policies, but also to respect who you are in your role and especially in your role as society sees it, you know. So I think that that was also really very interesting. She had said as a responsibly to the patient and a responsibity to the community correct and how to sort of traverse both of those. Yea. So people are very hesitant to you social media. So let's break it down into small fit right. So why? Why should a practice engage in social media? Well, you know, I think what what it ends up being is there is so much. People just see the dangers of social media. People recognize that there are potential positive use cases. In fact, we did a survey of clinical trial lists in one of the cancer research groups called Swag Cancer Research Network, and this was done by my colleague Mina said Rack, and his question was really simple. I think it gets to you our point. What you know? Where do you see the role of social media and clinical trials and getting people to sign up for trials? And these investigators who design...

...trials and ran them said, oh, the potential is absolutely there to sort of do the outreach, to explain it, to encourage people to sign up for a trial or at least just to get more information about them. But the same thing came back. You know, I would be weary about doing it myself because I would be weary about getting push back or, you know, I don't want to be dragged in to this conversation where I have to be where I have to defend myself, and also, you know, I would I see this as a potential danger zone because I don't want patients telling me about their stories on social media because then I'll I don't want to have to respond to that. And then it was more. You know, I have so much during my day already. I don't have time to do this. This sounds like more work on my plate and why would I do this? And then, frankly, people are saying I don't have time. You know, there's just I don't have time to log in and do all the stuff and and do this. It's like when I leave my office, I want to just leave my office. I don't want to have to log in to do this. So all of these bearers are leading to this huge segment of the professional oncology community and, quite frankly, I think all the stakeholder communities non engaging and not aware of what's being discussed, you know, and not and if you think about how we interface right our conferences are geared towards target audiences. Those target audiences never really merge. You know, we have the American Society for Clinock Call College annual meeting and you know the American Association for Cancer Research Meeting is going on now. The target audience. So those...

...conferences are clinicians and researchers in oncology and we can get credit for attending those meetings. Patients are very interested in these meetings, but they're not the target audience. And if you look at the things that are advocacy groups are meaning, the target audience is not the physicians in the cancer space. They are speaking to patients, caregivers, advocates within their own communities, you know, and the only times when you can actually hear each other crosstalk is on social media, you know, and that APP a treaty for collaboration is huge. It is huge and in fact that's sort of one of the, you know, lessons that we try to promote in COSMO. So I was called out when I tweeted Cosmos meeting because the target audience was positions, advance practice providers, nurses, social workers, all these folks in the cancer space. And, you know, someone was like our patients allowed to attend? I was like absolutely, you can attend. Then like would you consider maybe making us one of your target audiences, and I was like that's brilliant. So we actually added patients, advocates and caregivers as part of the target audience, even if they couldn't get credit for it, that they were still a part of the conversation. They were onezero percent a part of the conversation. Yeah, I mean because, honestly, these conversations are happening online, on twitter, on facebook, and sometimes the information shared is not accurate, correct, correct, and in fact Sylvia Chow, who's at the Niage, did a talk for us on, you know, misinformation during the covid nineteen pandemic and how it relates to oncology. Yeah, because it is huge and she made the point that, you know, missing from misinformation is more easily and more frequently...

...shared than the truth, and I think part of that is the truth can be inaccessible, you know, when you're talking about a new pathway, you know oncology, or when you're talking about a new drug or you're talking about a new trial. So often we get caught up in the lingo of medicine, whereas our miss the you know, those things that are being touted is untrue. Our housing stories. A friend of a friend died of the vaccine. This is why you shouldn't take it. Is More clickable than a phase three trial showed. An have an overall response rate of forty percent. Absolutely, I mean, which what's going to sell papers? Correct and you know, and I don't think. I don't think that's how we we don't do that well in academia. You know, I was fortunate enough to have shared for the American side of clinical on collegy their communications committee. I was eye opening because we had to you know, one of our tasks was to look at the all the new research breeding presented at our annual meeting and identify the stories that would be of interest to the lay public, which are very different than what should be, you know, highlighted for the scientific audience. You know, they're not the same thing. Yeah, you know so solutely. What is the saying? It's something like a lie could travel the world before the truth even puts its shoes on in the morning, right. Well, you know, there was even this idea, and you know evidence based medicine, that from the time a positive phase three trial makes its way to standard of care practice is measured in years. It takes that long to change how...

...we practice. So now you think about, you know, right, misinformation that spreads like wildfire through the Internet. You know, case and point, the Mrna vaccines that are using against covid nineteen. The the false narrative is this science was approved too quickly, that this technology was, you know, was developed too quickly without realizing that this work, this work of using an Mr and a protein or an Mrna fragment to induce an immune reaction has been decades in development. You know, not really a new it's absolutely not new and you know. But the the false narrative is this came out of nowhere and now we're used, we're injecting this into our body and we know nothing about it. And I'm likely there have been companies formed well before this pandemic to try to harness the power of MRN a technology. What are some best practices or techniques that you had find work when combating this false information? Well, you know, I think that's that's one of the things that is it's an ongoing discussion and I think this is one of the the thoughts that Cosmo, I think, can help sort of either develop an idea to sort of test in the real world or not. But Dr Chow had made the point that misinformation is best addressed in that office conversation between a doctor and a patient. You know, but it means a DOC needs to devote time to explaining why something is false. So what made me wonder about that is that all of these efforts across, you know, the world to combat misinformation, how well are we doing when we create these public health campaigns? You know,... know, if the only people who are reading at all those people who don't don't believe the narrative, then it's an ef it's an echo chamber, and whereas those folks who believe in that false narrative, they are finding their own sources and that's what they're looking at, you know. So it is interesting. But you know what was interesting to me is that I have a very active tick tock account. Oh, I do. I we're going to have to include the link to that Tick Tock. You should, but you know, I and others are on that and some are more confrontational than I choose to be. But you know, I lighted a story recently about how one in three people who survived codd are getting a diagnos of a neurological or psychiatric condition within the within the first six months since they're diagnosis, and that, you know, one to two out of every ten people who had this happened. It's their first diagnosis, so they didn't come into covid with a pre existing depression, but they're being diagnosed with it for the first time as they're recovering. You know, sort of gets into this idea of long or not, this idea that this syndrome of long haul covid is real. You know. But what was interesting about that is that, a it got over a hundred thousand views, which, you know, I think, is it really interested? Great em first? Yeah, but it's also the discussions that people have engaged with. You got people sort of, you know, claiming the pandemic isn't real and claiming the vaccine is dangerous, you know, and then you're seeing people engage and sort of, you know, framing that.

But the idea that you can say something, make it relatable and then latch on the source of the information. I you know, I walked away thinking, I wonder if people engage more if you include a source. So say you had to, you know, to tick tocks one were you saying this is false and this is why, and you left out that you had the second saying this is false in this is why, and this is where you can read more about it? Which one would prompt more engagement, you know? So I think that's a really, really testable idea. Yeah, I would love to see some number. Maybe I'll try that myself. Yeah, I mean I think we could. I think it's an it is a really interesting concept and this is one of the ideas I came out of COSMO actually excellent. And so, when we're talking about social media, we mean facebook, twitter. Is there a particular platform that you recommend is more effective than the other? It depends on who you're trying to reach, okay, but it also depends on which platform you feel most comfortable in. You know, what I would say is that, whichever the platform you are looking at, take the time to test it out, take the time to look at the conversations tech, you know, to see who's on it, to see what's being you know, what's floating to the top and who's engaging in those conversations, and if it's something that you feel in affinity for, then it is worth that small investment in time to sort of figure out how this wholefl works. My I you know, my social media activities span facebook, twitter, instagram and tick Tock. Well, what I would also say and this came out and Causemo as well. There's value and there's importance on in being authentic,... know. So engaging and social media to sort of develop a brand or your to promote yourself has an oncologist, as a surgeon or as a as an advocacy group. You know that's not going to work well, because I do believe on social media people can can tell if you're being authentic. They also can tell what's entertaining, but for purposes at professional years, they can sense authenticity and that, I was also extends to ensuring that people are aware, you know, the perspective you have. Is it informed by things you're doing? So conflicts of interests need to be quite clear, you know. So my my use is, you know, I use it sort of cross platforms to reach different audiences, but you'll see the same person across all of those media. You know, there's no Oh, this is who he is on Tick Tock, but this is who we as an instagram and this is who we's on facebook. So I do a lot of cross platform posting and the reason I actually explore ticktock was, you know, the the ability to make short, fifteen to sixty two videos was genius because on other platforms that leads to better engagement. Something visual, something short form video or going to picture is far more engaging and than just text. Absolutely this pandemic has caused me to spend a lot more time on the Internet than I would like and on twitter, and these these videos are pretty catchy and I get it. I can see them, they're in Kate, they're engaging and I can see a patient gravitating towards a okay, quick by of information that I can take it with me. Yeah, so I need this whole idea of like...

...visual abstracts, for example. I mean there's a reason that I think there's so much interest, because you're then force. It's like, you know, saying what you need to say in two ND eighty characters. Right. There's, you know, the attention span, you know, doesn't last for thirty minutes and it certainly doesn't last for two hours before you start to wander. But if you can sit there and look at a picture and follow what's being said, that's actually more engaging than putting a paper in front of people and stay same thing with video, if you can just what is the most important takecomb here? What's the message here and you can, and if you can do that in a very short video, then I think that is more engaging. So we're just getting started on social media. I'm brand new. I you should. I should first start by exploit the platforms, right. So maybe go to twitter, maybe go to facebook and check out the step, the search bar knee and maybe type in oncology. See what's floating up to the top, see what people are talking about. Yeah, yeah, and you know, I think the best way that people sign up or sort of figure it out, and I would actually encourage your group to do this, is if there's a big mean that you you go to or interest in, then you know, following the Hashtag, which is really that, you know, the number sign, followed by, you know, whatever the conference tag is, is a great way to you know, to follow it. And for right now I'm actually following the AACR meeting, you know, the American Association for Cancer Research, Two thousand and twenty one tag. So it's Hashtag ACR two thousand and twenty one, and you can see the abstracts that are being discussed and that are being promoted on social media and you know, apparently there was just a very big lung cancer trial and the you know, the...

...the presenting author was on twitter, you know, explaining the abstract in a series of tweets and the background of how this study went about. This is the kind of access that I love to see more often on social media, is that people presenting data are actually on there and are discussing it. So he's not only, you know, pushing out information, but he's also responding to people, and I think that's the bidirectionality that I think is really critical, because for so long in our meetings we were only talking to each other, but on social media it's highly Democrat and democratized, let's say. So following it around and a conference is a great way to get exposure. But the other way is, say you're interested in genetics or you're interested in, you know, breast cancer or prostate cancer, or you know leadership. You know there's a whole collection of Hashtags, or you can, you know, you can filter down the billions of tweets that are every day and filter it down to the ones you're most interested. So in general, if you just want to see what are people talking about in healthcare, each CSM or healthcare, social media is a great tab just sort of filter. Breast Cancer has one, BCSM guying a collogic cancers has one in GIN CSM. You know, there are Radiation Oncology Journal clubs. There's even women in Radiation Oncology there that that meet on twitter and have tweet chats. So there's a niche for everything. There really is. In my friend Matt Cats, WHO's a radiation oncologists and also helped form this group that form cosmo. You know, he was actually the person who really got us all started on the use of cancer...

...hashtags and you know, he published in the journal American Medical Association, or Jamma, on the use of these hashtags, you know, oncology, and we've really taken it because it's a way for us to follow the conversations that we're interested in and for the communities that we serve. Yeah, I love it. So research doesn't have to be teched away in academic circles. Only with social media we can make this research available and known to so many more people. Correct you've been a patient, a friend of a patient and access it readily on twitter. I love this openness of information. I love to get out of sharing and well, I think the thing is that. You know, there's still a large continuency of professionals who don't believe the data should be that open, that they should be the gatekeepers of the data. Unless I say, I get it from a source that I trust, then you shouldn't be reading that anyway. And unfortunately that's just not how the world works, say people. You know, because of the Internet, you know, the gates of open. We're no longer the arbiters of what is good data and what is in good data. We're no longer, you know, the people who present the papers for our you know, people under our care to read. They aren't getting the papers themselves. There are people who survived sarcoma or lung cancer and they are becoming medical experts of their own right because their own experience has given them the expertise in the medicine that affect them the most. You know. So you know, there's there's just these are very rich conversation that probably could be even richer, if more if if we stopped ignoring... I love it and it's free to sign up for these platforms and it's not just for educating the community about cancer care and cancer FAQ's. It's also about listening to what's new in the in the fields, and also connecting with your co workers or connecting with your colleagues. Onezero percent right. And and also, I think the networking thing is huge actually, and that working with people who are not who you never met before. You know, I've made so many connections via twitter and I collaborate with so many people I'd never met in real life. So I coined, if I coined a term, and I'm waiting for Websters to pick it up, but I think you know, twitter friends is. This is what I have. I have friends I've made on twitter and I call him twins. Twitter friends wins, twins, you know, but this is really what they are. They're twins and I can't wait to meet them in person. And having met people that I met on twitter, there's just this very broad sense of familiarity and friendship and there's like, oh my gosh, I feel like I've known you forever and it's because you've engaged with them on social media. Increasing that could that connection. Onezero percent, and I think the social media connections. Anyone who's been who has has been treated for cancer and go into these online communities, know there's a camaraderie that's very real. You know it's you know it's not. It's not a traditional support group. It's actually richer than that, because not only are you getting support, but you're educating and you're being educated at the same time. I even have people who found me because of social media, where they put out to their communities. I was just diagnosed with breast cancer and...'s been six weeks and I still haven't seen a surgeon, and someone saw that and took it to their own colleges, who then reached out to me, and then we really reach out. It's it's a living community without borders. Have it as so you'd highly recommend that anyone at the practice level we can start the process of getting involved in social media. Yeah, I mean I just don't think we're in a place where ignoring it as a real option, though I don't think you can ignore it absolutely. This has been a really great conversation up and to thank you so much for joining us today. I do like to end our calls there and our air views on that kind of happy note. So, looking into the future, what do you want to see in that future of oncology and social media? Well, I think what I would like to see is a more widespread adoption where more people are engaging in conversations, but in a way that respect is assumed and that, you know, the conversations reflect the diversity of opinions and just a much more, you know, profound way, because I think we can learn from each other and I would love more people to start learning that way. We will, I'll hope for that. That'll improve the workplace and it'll improve care for patients absou I think. So exactly can comb in the ky or respectfully onezero percent. It's all about respect really. So if any of our viewers or listeners want to follow up or just want to reach out to you, what's the best way? Well, so I'm on Clubhouse, okay, but you know, I think if you want to reach out to me, follow me on social media, whatever platform you're interested in. Looking at Ticktock, facebook,...

...twitter or instagram. I'm the same. I use the same user name. It's at Dr Donn Has Dison, and I think on Tick Tock you can only direct message me by Instagram, so it'll send you to my instagram profile. But I've been getting quite a bit messages on Instagram and I respond to every single one of them. So that's my other cardinal role, is that social media cannot be unilateral. If you're going to start a conversation, it's your job to continue the conversation. overcation is not one sided. It's absolutely to a street. It is Onezero percentad excellent. Dr De's on I so listeners, I will be adding all of these lakes to the show notes, or you can find them Dr Di's. I'm thank you so much for joining me today. Thank you so much. I had a great time. Are You satisfied with your patients currentsy to therapy or are you just settling? You can improve patient outcomes with bioplus specialty pharmacies power of to the first ever two hour, two day to gather promise. It's faster and easier for you and your patients to learn more. Visit bioplus Ur xcom. You've been listening to working in oncology. To ensure that you never miss an episode, subscribe to the show in your favorite podcast player. If you're listening in Apple Podcast, we'd love for you to leave quick rating of the show. Just have the number of stars you think the podcast deserves. Thank you so much for listening until next time.

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