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Profiles in Oncology Social Media

National Coalition for Cancer Survivorship, @canceradvocacy

Butcher, Lola

doi: 10.1097/01.COT.0000471993.18740.4e
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YouTube (http://www.youtube.com/user/CancerSurvivorship) description: “The National Coalition for Cancer Survivorship advocates for quality cancer care for all people touched by cancer and provides tools that empower people to advocate for themselves. Founded by and for cancer survivors, NCCS created the widely accepted definition of survivorship and defines someone as a cancer survivor from the time of diagnosis and for the balance of life.”

Twitter: @canceradvocacy

Greg Aune, MD, PhD, Assistant Professor at Greehey Children's Cancer Research Institute at the University of Texas Health Science Center-San Antonio, was diagnosed with Hodgkin's Lymphoma at age 16 and successfully treated with chemotherapy and radiation. But in the 25 years since, he has suffered a stroke, developed pre-diabetes and undergone open heart surgery to repair a damaged valve and three severely blocked coronary arteries. Through all those challenges, he has taken responsibility for his own survivorship care.

“I never had an oncologist or a survivorship doctor advocate for me,” he said in a recent video interview. “... I'd say, ‘I need an echo this year, I think I need a colonoscopy now because I had radiation in my abdomen. I need this, this, and this test.’ And we'd do it. And that's kind of how my survivorship care has been provided.”

When Shelley Fuld Nasso, Chief Executive Officer of the National Coalition for Cancer Survivorship (NCCS), heard his story, she recognized it would be great content for a video post for NCCS's “Cancer Policy Matters” blog: “He explained so clearly why survivorship care plans are important,” she said in an interview.

“That's something we've advocated for, for a long time. Having other voices echo what we advocate for—and to provide his experience as an oncologist and as a survivor—helps make the case for why this is so important.”

In the interview, she elaborated on NCCS's use of social media.

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How does social media support your legislative advocacy work?

Shelley Fuld Nasso: “It has definitely changed how we engage with members of Congress. For one thing, we tweet Congress members to thank them for their support of legislation we support.

“For example, we had advocates making Hill visits recently around the introduction of the Planning Actively for Cancer Treatment Act—PACT Act (H.R. 2846)—introduced by (U.S. Reps.) Lois Capps, (D-Calif.) and Charles Boustany (R-La.)—to create a Medicare fee-for-service code or cancer care planning. So, when we had advocates meeting with members of Congress, we would tweet them and thank them for their time in meeting with us.

“And we use PopVox (see box) to allow constituents to register their support for legislation and send a message to their members of Congress. When people share why this is important to them and what their experiences are as a cancer survivor, we get their permission during the process so we can share that through social media and also tweet to the member of Congress that ‘So-and-so from your district supports the PACT Act because....’

“That is a good way to interact with members of Congress and their office staffs because they always like to be thanked. And if you have a more public way of thanking them besides just sending them an email or a thank-you letter, they like that public recognition.”

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NCCS has a very active YouTube channel, featuring everything from interviews to webinars to organizational messages. How do video posts figure into your work?

“We try to take our video camera to the meetings that we host, and we ask our great faculty members to take a few minutes before or after their presentation to record a video that we can use on the website. Or sometimes we take our video to their office to interview them about why their work is important and what motivates them.”

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You have high visibility as the organization's CEO. Are you the official social media voice of NCCS?

“Jordan Jennings, our development and communications manager, is in charge of our social media. When we first started, we talked about whether I should tweet as NCCS or as me. I tweet a lot during events, and I usually tweet under my own Twitter handle (@sfuldnasso), and then Jordan will retweet from @NCCS if the information seems relevant to our audience. If I'm tweeting through a number of presentations at a big meeting, not everything is relevant to retweet.

“We have other staff members who will feed Jordan content from a meeting to tweet, and sometimes they tweet as @NCCS as well. But we have to be careful. There have been social media gaffes, even in nonprofits, where somebody makes a mistake and tweets something personal to the organization's account. So it's usually safer if you have one person doing it, rather than having lots of people with access to the same account.”

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What is WCOE?

“In April 2014 we launched our blog ‘Cancer Policy Matters’ (www.canceradvocacy.org/category/blog). We use it to comment on cancer policy issues and provide a patient perspective. We have a lot of guest posts from physicians and patients and a wide variety of people. We use social media to help inform people about the blog posts, so if you follow us on Facebook or Twitter, you can see when we put up a new blog post.

“Every Friday we have a blog post we call WCOE—What Caught Our Eye—that highlights some of the things that we saw in the media in the past week. [A recent WCOE included links to articles from The New York Times, NPR, The New Yorker, and USA Today and the transcript of one of the National Cancer Institute's #CopingCancer twitterchats.]

“There's so much media out there. Social media helps us curate the content that is relevant and useful. Some of the people I follow on Twitter help me make sure that I don't miss important articles that are out there. It is easy to miss things, which is why sometimes you have to tweet about the same article two or three times, because people might not see it if you don't.”

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Do you use social media for fundraising?

“Social media is definitely a vehicle for building your network of constituents. As you build that network and continue to communicate on a regular basis about what you are doing and how you are advocating on behalf of patients and survivors, you then have an opportunity to go and ask them for support. But it's not automatic, and it is not an immediate connection. It's a way to build a relationship and a level of trust.

“Our existing donors receive our email newsletter, which recaps some of our blog posts and social media messages. So even if you are not following Twitter every day, you can see in our newsletter what we have been doing.

“We don't ask for money all the time, but when we do, we know that they have seen on a regular basis what we are working on and how we are providing value.”

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What advice can you share about use of social media for advocacy work?

“You lose an opportunity if you just put something on YouTube, for example, and you don't also promote it from your website, your Twitter feed, and your Facebook.

“But it's important to consider the medium in which the content is delivered and tailor it to the specific audience. So how we promote a blog post or other content needs to be different for different platforms. For example, patients and survivors are really the audience on Facebook, and because it is more visual and you can include images easily, that works for people who might just ‘like’ the content and don't necessarily engage with it.

“What is really important is integrating social media into everything you do, but you have to be thinking about how to do that right. It takes time to develop that mindset to let people know that we are out there every day, working on behalf of cancer survivors.

“So when I am meeting new people, I try to think ‘Is this someone who might be a good person to write a guest blog for us?’ Or if I'm attending a meeting: ‘Is this something that we should share with people who follow us on social media?’”

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Continuing Series

The full archive of this award-winning series can be found in this Collection on the OT website: bit.ly/OT-OncologySocialMediaProfiles

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What is PopVox?

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PopVox (Popvox.com) is a civic engagement platform that allows people to easily inform members of Congress whether they support or oppose pending bills—and why. The site claims to have more than 400,000 account-holders, each of whom has been “verified” as a real person so that members of Congress know who they are hearing from.

Advocacy groups such as the NCCS, as well as other organizations and companies, create a PopVox profile and register their own positions about proposed bills and regulations.

For example, the American Cancer Society/Cancer Action Network (ACS CAN) earlier this year registered on PopVox that it opposes H.R. 1190, which would repeal part of the Affordable Care Act. The ACS CAN page includes the text of its letter opposing the resolution and allows account-holders to send messages to Congress either supporting or opposing the proposal.

PopVox delivers comments to legislators and aggregates constituent responses to allow a visual display of what Congress members are hearing from the public.

Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
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