2015 ASCO Educational Book - Using Social Media to Learn and Communicate about Cancer, with Michael A. Thompson, MD, PhD and Nathan A. Pennell, MD, PhD

November 10, 2015
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In this podcast, Dr. Michael Thompson discusses his article, “Using Social Media to Learn and Communicate: It Is Not About the Tweet” with Dr. Nathan Pennell.

Transcript: 

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ASCO: You're listening to a podcast from Lineagotica. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors that care for people with cancer.

This podcast is part of a series featuring articles from the 2015 ASCO Educational Book. Produced annually, the Educational Book is a collection of articles written by ASCO annual meeting faculty and leaders from ASCO's other meetings. Each volume highlights the most compelling research and developments across the multi-disciplinary fields of oncology, and serves as an enduring resource long after the meeting concludes.

In today's podcast, Dr. Michael Thompson discusses his article Using Social Media to Learn and Communicate. It's Not About the Tweet with Dr. Nathan Pennell. Dr. Thompson is a medical oncologist at Aurora Cancer Care and the medical director of early cancer research at Aurora Health Care. Dr. Pennell is the director of the lung cancer medical oncology program at the Cleveland Clinic Taussig Cancer Institute. He is also the Associate Editor for the 2015 ASCO Educational Book. ASCO would like to thank Dr. Thompson and Dr. Pennell for discussing this topic.

Dr. Pennell: Hello, my name is Dr. Nathan Pennell, medical oncologist at the Cleveland Clinic and associate editor for the ASCO educational book. I'm joined today by Dr. Michael Thompson from the Aurora Research Institute to discuss Dr. Thompson's 2015 Educational Book article titled, Using Social Media to Learn and Communicate. It's Not About the Tweet. Welcome, Dr. Thompson.

Dr. Thompson: Thanks for having me on.

Dr. Pennell: I thought this was a really interesting article, and I think ASCO has done a nice job of trying to highlight the benefits of social media over the last few years. Can you take us through your article?

Dr. Thompson: Sure. Many know the ASCO Education Book is based on people getting educational sessions at the ASCO annual meeting. And this one was on social media. I've talked on this before, and what I tried to concentrate more on this article compared to some of the prior manuscripts I've written is about use case. So pragmatic ways to utilize social media in our daily lives.

Dr. Pennell: It's a very practical paper here. And I know it was just in your introduction, but part of the message of your paper was, it's time to stop trying to pitch why social media is useful and get into actually doing it for the people who are already interested, that others will catch up if they're truly interested. And I was wondering if you really think that we've reached that point where it's time to stop selling this to other oncologists and move on to actually making it practical for those who are already here.

I think people are still joining it, and I still talk to people about trying to join it and try it out. But I think I've gone from years of being an early user and only having a few people around that were using it to where we don't have the majority or a large number of oncologists on it, but there are more numbers. And I think the people that want to use it are using it and some people are still catching up to it, but I think we have enough people that we don't need everyone on it to make a difference. We just need some people on it and we're seeing that now. In some of the stuff I do with myeloma, we actually have a large number of people in that area. I think same with lung cancer. There is a good group in breast cancer. I think for potentially some smaller tumor types, there is still some encouragement. So myeloproliferative neoplasms has been a relatively new Twitter chapter that started and is gaining momentum. But I think people may see this for the smaller tumor types as well. What I thought was in the ASCO 2014 meeting, we worked with ASCO to try to increase the signal noise and have some people that-- people new to social media might be able to follow and use hashtags, and we-- relatively quickly, and we forgot one important tumor type, lung cancer, for the hashtags, and the lung cancer community got very upset because they saw that as taking away sort of a right or a main way to communicate. And to me, that was an inflection point saying the people really are demanding this. They really see it as a core thing rather than just a couple of early adopters doing something strange. For people interested in a certain tumor type especially at a large meeting like ASCO, they can potentially look at their hashtag or follow people to curate information and improve their signal to noise ratio. And I think if you miss anything, you can also find it quicker than waiting a few months where it comes out in some of the oncology paper articles.

Dr. Pennell: I know that that's one of my favorite things about being engaged on Twitter, is not having to wait for the once daily newspaper report that comes out, and you can actually see things as they're happening in real time. Although obviously, you don't always get the full story. And as far as increasing the signal to noise ratio, I think this is critically important. I know that the problems I've had at the annual meeting in the past is, if you just follow the ASCO 14, I think that was the first year I really got into it, the number of tweets that came through that was immediately overwhelming. In fact you could just see the stream moving in time and you didn't have time to really absorb what was going on. So how would you advise someone, say who is coming to the annual meeting, to set their Twitter feed up so that they would be able to get a meaningful information out of all of that?

Dr. Thompson: Number one, I like the analogy of the stream or river, and it's going by, and whether you're in it or not in it, it's still going to keep going by. So you don't have top always catch up with it because you can search it later. And you can dip your toe in or put the whole kayak in whenever you want, and be in it as long as you want. So for instance if you are looking for lung cancer updates from ASCO 15, you can do #ASCO15 #LCSM and look for things on lung cancer. So just this morning I was looking back for some stuff on amyloidosis at the end of the meeting on Tuesday with Morie Gertz when he was talking about amyloidosis and trial. And I forgot exactly the name of the trial and the drug, but I just used his Twitter handle and amyloidosis and I could find that popping up preparing for a Tweet chat next week. So it can be used by yourself or by others to take notes and to look at the curated content throughout the meeting. So if there's a plenary session or a discussion that you really thought was interesting, you could look at the relevant hashtags. But some other uses are sharing information, which you can't really do in a non-HIPAA compliant network like Twitter or Facebook. But Linda Burns at ASH has talked about something called MEDTING where it is a HIPAA compliant platform. There's also promotional uses, so whether that's institutions like Cleveland Clinic, or Aurora, or it's ASCO, or ASH, or the NCI has a number of Twitter handles for a variety of purposes and it's promotional. So it's not just the pharmaceutical industry but it's every group that has something to say. The FDA has a Twitter handle. And we can use it for educational networks. So some of the early ones that started were BCSM for breast cancer and LCSM for lung cancer. I started that around 2013 with a number of thought leaders in myeloma. And we've had nearly 20 of those discussions so far and I think it's been very helpful, and a number of patients' advocates, basic science, and clinicians have picked up on it and found it useful.

And then some other ideas are crowdsourcing or crowdfunding. This has been used for Kickstarter or Indiegogo and Petridish and other platforms for things like music or movies or electronic devices. It's being used with somewhat of a slower startup to try to fund things in biomedical research, so Alliance has actually asked for ideas from the public and crowdsourcing for a few years. We have been trying to do that with the Myeloma Crowd Research Initiative, which is a little bit different in that we had letters of intent come out, people submitted applications, and there was many of them from around the world. And then we had knowledge experts vet them and we had a patient panel vet them for patient interest and then voted on them, and we're currently ramping up that crowdfunding campaign now. And I think one of the other things is collaboration. I talked about MEDTING for discussing information. But you can collaborate not sharing patient-specific information. So I've done that in the realm of social media and talking about things on social media, but I've also asked questions and I've seen other people ask questions about, do you have a reference for this, or is there an example of how you would use this, or is there someone knowledgeable about this rare disease? And so I think that's one way to collaborate and it's relatively accessible. I just had lunch with someone on Monday who I had never met before and he followed me on Twitter and then said, "I'm in Wisconsin, would you be up for meeting?" And that started our communication, and now we're looking at some precision medicine initiatives with that. So I think it's a great way to survey the landscape of what information is out there, and you can dial it back so there's minimal information and streams coming through by following fewer people or looking at it less often.

Dr. Pennell: All right. Well, thank you. That was cool. You can also view Dr. Thompson's article online at asco.org/edbook for a more in-depth discussion on this topic.

ASCO: Thank you, Dr. Thompson and Dr. Pennell. Please visit asco.org/edbook to read the full article, or visit lineagotica.info/advocatessocialmedia to find tips on getting started with social media.

Lineagotica is supported by the Conquer Cancer Foundation, which is working to create a world free from the fear of cancer by funding breakthrough research, sharing knowledge with physicians and patients worldwide, and supporting initiatives to ensure that all people have access to high-quality cancer care. Thank you for listening to this Lineagotica podcast.

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