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Plugged-in Patients and Their Advocates: Using the Internet to Your Advantage

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Published on October 6, 2015

Transcript | Plugged-in Patients and Their Advocates: Using the Internet to Your Advantage

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.     

Andrew Schorr:

Hello.  I'm Andrew Schorr on location in Denver, Colorado at the World Conference on Lung Cancer.  We get to meet with a lot of interesting people who are so devoted to helping you do better with lung cancer, and of course there's so much research going on.  How do you connect with the communication about it so you can find out, is the research going on that can help you?  How do the researchers connect with you in a changing field? 

Well, joining us now is an oncology fellow.  That's Dr. Mina Sedrak, who is at the University of Pennsylvania, the Abramson Cancer Center, a younger doctor, as you can see, who is very plugged into the Internet and how that can help make this connection.  Thanks for being with us. 

Dr. Sedrak:

Thank you for having me. 

Andrew Schorr:

So am I right that for those of us who use the Internet and patients who use it, if we use it right, we can create this true community between researchers and patients and do some matching that can maybe save or lengthen lives?

Dr. Sedrak:

I really believe that the way that patients are obtaining health information is changing rapidly, and new modes of online communication such as social media is really an opportunity for us as researchers and doctors and investigators and pharmaceutical companies to think about targeting health information effectively, and we have to tap into those social media avenues now and in the future.  

Andrew Schorr:

Okay.  So we're in this age of sort of personalized or precision oncology, so we're finding all these oncogenes, right, and which do you have and what medicine might line up with it.  So can we use social media to try to connect with specific subsets of patient groups? 

Dr. Sedrak:

I think I don't know the answer to that.  I think that we still have to figure that out.  What we are thinking about is, you know, in order for us to go down that path I think we have to first describe the landscape of what is being discussed on social media when people are talking about clinical trials.  That's sort of the research that we have done is we feel like it hasn't really been described what the content is of clinical trial communication, particularly on one form of social media, which is Twitter.  So Twitter, which I'm sure many of you know… 

Andrew Schorr:

140 characters. 

Dr. Sedrak:

140 character limit, 360 million active users, and over 500 million tweets generated per day.  And there's data to show that 74 percent of patients or family members who have cancer or have had cancer are using the Internet.  35 percent of them are using social networking sites such as Twitter. 

There [haven’t] been many studies looking at what is the content of cancer care on Twitter.  There's actually been about six or seven that have really analyzed that information, and they have shown that cancer patients use Twitter to receive and give psychological support, to share information about their cancer narratives from diagnosis to survivorship, and to engage in dialogues about prevention including mammograms and pap smears. 

Studies have shown that Twitter is used by public health organizations to promote smoking prevention and cessation and by oncologists to discuss their research and to share opinions, particularly at large national meetings like ASCO and ASH and the World Conference on Lung Cancer. 

What we don't know is how does the public use Twitter to dialogue about cancer clinical trial.  So we set out to describe the landscape in lung cancer by characterizing the content of tweets about lung cancer, identifying which of those are about clinical trials and then further categorizing those tweets and also the link that's embedded in those tweets to understand, well, what is that clinical trial tweet, where is it leading users?

Andrew Schorr:

What did you find?  I mean, is it showing potential?  

Dr. Sedrak:

We found that the majority of lung cancer tweets, when we looked at them over a two?week period were about—were from individual patients sharing their personal narrative of support and preventive dialogues.  That was sort of the majority. 

The third largest category was clinical trial.  About 17 percent of the tweets that we found were about clinical trial.  We took those tweets, and we further analyzed them to understand were they therapeutic trials that were about human research involving a drug or a device? Were they nontherapeutic trials, such as quality of life trial, or were they potentially therapeutic trials, trials about a basic science research that could potentially become a drug or a device for human participation in the future?

We found that the majority of the tweets, 83 percent of them, were about therapeutic clinical trials, human research involving a drug or a device.  More than half of them were about immunotherapy, which is a very hot and important topic in lung cancer right now. 

Then we looked at the embedded links of these therapeutic clinical trial tweets, and we found that majority of them were leading users to news media and articles, announcements about new therapy and new drugs and the changes that are happening in the landscape of lung cancer.  Only one tweet was directing patients to a specific enrollment site with patient information on how to enroll to a clinical trial.  

Andrew Schorr:

Okay.  So the buzz is great, but if you, let's say, are sharing that for family members, people you care about, your community, you want them to be able to take action, so it seems like there's a lot of room… 

Dr. Sedrak:

That's right. 

Andrew Schorr:

…to use social media for, if you will, suggested action that will be useful for the reader, for the recipient.  We have a long way to go.  

Dr. Sedrak:

Exactly.  I think that what we basically have shown is that there is a—there's a potential opportunity here to really look further and see is Twitter a viable media to raise awareness and also increase accrual onto clinical trial. 

Andrew Schorr:

And, of course, what we do is on the web, and then there's Facebook and other platforms as well, so we can begin to see this more broadly.  

So you are a younger physician, and you speak at a conference where there are a lot of gray?haired people, okay, and this is all new to them.  Are they like dispensing with it?  Are they listening?  Are you finding that the medical community is open to this given that there are many more clinical trials now, there's a lot of research happening, but often there's a disconnect with the potential patient who could benefit.  

Dr. Sedrak:

I think that it is—they're finding a lot of this as very provocative and in its embryonic stage, so they have a lot of questions about whether this will actually work or not.  But I do believe that—when I gave the presentation today a large [number of] people that came up to me afterward were patient advocates, and they are really interested in this.  And I think to be able to be invited to give this talk at this kind of conference where the leaders are very heavy basic scientists and clinical trial investigators, it does show that we are beginning to rethink how we do things. 

And one of that way is in the past we used to have a table and we would invite patients to be a part of it.  I think what we're moving towards is there's a table that the patients are leading, and they're inviting us to be a part of it.  And I think that is going to be the future of how we solve some of these societal problems like critical trial accrual. 

Andrew Schorr:

Thank you for being a younger physician who may help transform all this, and as an Internet kind of guy who has benefited from connecting with trials on the Internet myself, I've been in two, I want to thank you for your leadership. 

Dr. Sedrak:

Thank you so much for having me.  It's my pleasure. 

Andrew Schorr:

Thank you.  All right.  So we're Internet people, since we're watching this on the Internet. And we know he's really on to something, and I think patients and patient advocates are saying go for it, and if we can get the medical community, all of us talking, I think we can accelerate research, the benefit to us and the benefit to others that will follow. 

On location in Denver, I'm Andrew Schorr.  Remember, knowledge can be the best medicine of all.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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