Advocacy in the age of social oncology is no longer about simply “raising awareness” or boosting funding. According to Samantha Watson, who founded the The Samfund after her own experience as a young adult with cancer, those who are battling cancer, and those who did, are clear that they are looking for community and emotional support as much as they are financial resources.
While the analysis of hashtag communities that provided the backbone of this year’s edition of The Social Oncology Project found that advocates have huge influence in drawing attention to high-quality information resources, Watson’s experience suggests that information-sharing is just the tip of what can be accomplished through online networks.
Watson’s primary goal is providing grants; her group has given nearly $2 million to young adults dealing with cancer-related challenges, from medical care to financial assistance for adoption. But Watson said that the Samfund recognizes that they have a role to play in building online communities, too.
Watson discussed the new realities with us in advance of the ASCO meeting; if you want to carry on the conversation, please seek out Watson’s booth on the expo floor:
Samfund is mostly young adults. Is there a sense that this new generation of survivors is connected differently because of technology?
“Social media makes it much easier to reach people we could never reach via traditional media. Peer-to-peer efforts are critical for our fundraising. We have all of these people who are connected to Samfund, and each of them has online networks, so there is a ripple effect. We can share stories, and it’s amazing to see how so many people share them. We couldn’t do that if we were relying on newsletters and emails.
The online community has been huge. Half of our grantees are part of a private Facebook group. Watching them support each other has been huge. Social media gives them a place to assemble.
There will always be some problems that we, as an organization, can’t help with. But with our network, with our Facebook group, there is always at least one person, often more, who can chime in and say ‘I’ve been there.’”
You’ve written about crowdfunding before. How does that element intersect with this new type of communication?
“Crowdfunding is huge for our community. I was treated before social media, but an earlier version of crowdfunding helped me. It was totally lifesaving. When someone you know goes through an illness, the impulse is to ask what you can do to help. But for people who are far away, there hasn’t always been a good answer to the question ‘what can I do?’ That’s changing.
We still have to deal with how uncomfortable asking for money makes people. But that isn’t something that the young adult with cancer has to deal with. Setting up a campaign for someone is a great way for friends or family to help out.”
Are there drawbacks? Does building a national—but virtual—network isolate in its own way?
“We’ve tried really hard to get the best of both worlds. It’s important to have real-world experiences. But having a connection even with those far away is important, too. For someone who is skipping their meds and is geographically isolated, finding a community online is critical. We keep our eye on that a lot.”
What online resources have you or your grantees been able to tap into?
“We send every grantee all of our resources: our webpage and the private Facebook group and Instagram and Twitter. And we ask our grantees to help us out by sharing. We learned at our recent meeting for ‘Sambassadors’ that that is what is most important. In talking to them about what we do, no one mentioned the $1.6 million we’ve given out in grants. Instead, what they kept talking about was feeling hopeful again and feeling confident again, and how that came from being a part of a community.”
Download The Social Oncology Project 2016 here.