“What social media has done is give people a new voice, from patient to patient,” said Pat Quinn, co-founder of the ALS Ice Bucket Challenge.

During the summer of 2014, people around the world created more than 17 million videos showing them dumping buckets of water on themselves.

The videos generated more than 10 billion views and raised more than $220 million, some of which has been dispensed to drugmakers studying ALS therapies. Celebrities and politicians including Bill Gates, Taylor Swift, and George Bush participated. The ALS Ice Bucket Challenge created more buzz and awareness than either the Super Bowl or the World Cup’s advertising, according to Facebook.

The Ice Bucket Challenge showed it’s possible to have fun and use humor to deliver a message about a serious condition, the event’s co-founder, Pat Quinn, told healthcare and tech executives at the Digital Health Coalition Spring Summit held Wednesday in New York. And social media can be a very effective tool that shouldn’t be feared, he added.


Celebrities and politicians such as Bill Gates, Taylor Swift and George Bush participated in the ALS Ice Bucket Challenge.

“It wasn’t a big organization saying you have to do this,” said Quinn. “It was us fighting for each other and figuring out a way to first create awareness. Before you know it, I was getting calls, and our Facebook feeds were chaos. The world was in our corner. It gave us a new sense of hope.”

Quinn, who was diagnosed with ALS three years ago, said he did not expect the challenge to have such a snowball effect.

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Social media gave him as well as fellow patient advocate Pete Frates a voice that reached beyond their immediate circle of friends and family. It allowed patients from all over the world to connect directly with each other, he said, and “the feeling is unlike any other because you have a common bond, a common fight.”

PHARMA DOESN’T NEED TO FEAR SOCIAL MEDIA

Feminine hygiene brand HelloFlo uses humor to discuss menstruation.

Zoe Dunn, social media strategist and co-founder of Hale Advisors, agreed with Quinn, saying that drugmakers and other healthcare companies don’t need to be afraid of social media. She offered examples of healthcare and non-healthcare campaigns that have encouraged consumers to use social media to build brand awareness, including the ALS Ice Bucket Challenge and Pepsi’s use of fans to create a Super Bowl ad.

“We complain about the fact that we have no control over social, and that scares the crap out of us,” said Dunn. “Understand that you don’t have to control your audience. You can control the parameters with which they’re participating. And that’s really one of the great benefits of social media.”

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Dunn recommended that pharma marketers think outside of what seems like a direct correlation between the brand and the target audience. The Ice Bucket Challenge generated tremendous awareness even though there was no talk about ALS or the treatments for the disease.

Novartis’ Take This! campaign for Gilenya, one of its multiple-sclerosis drugs, is another example of thinking outside the box, Dunn said. “It wasn’t about suffering from MS,” she noted. “It was about the opposite — ‘I’m going to take charge of my life and do something about it.’”

Instead of keeping the tone of healthcare campaigns so serious, Dunn also suggested using humor to engage with patients and consumers. It’s O.K. for brands to poke fun at serious conditions sometimes, she said, pointing to feminine hygiene brand HelloFlo’s ads about “Aunt Flo” as an example.

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“If you don’t think there’s an opportunity for humor in light of a very serious thing, which is our health, then you really haven’t looked at the opportunity for leveraging a platform like social media,” said Dunn. “Because humor is definitely one of the things that’s going to pass that message around all over the place.”

SHARING PERSONAL INFORMATION

“Just because there are challenges, doesn’t mean that we should back off on being able to learn about how people are using their medications,” said Katie Collins, lead healthcare strategist at Twitter. Photo credit: Highways England/Creative Commons

One of the main issues that drugmakers and healthcare companies are trying to tackle is privacy. They want to know: How willing are patients to share their personal health information online?

Katie Collins, lead healthcare strategist at Twitter, said pharma companies shouldn’t back off from using social media for that reason. Patients are open to sharing their information on social media to learn more about products, sign up for co-pay cards, or enroll in clinical trials.

“They’re not providing their chart right there, but they’re providing a lot of information about their health,” said Collins. “Certainly, how we protect that information is very important, but I think social has allowed an outlet and the ability for consumers and brands to communicate, to share that information.”

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“It’s a value exchange,” added Tom Hespos, founder of Underscore Marketing. “What do I get for giving you my data?”

It’s no longer a one-way dialogue in which pharma companies feed consumers information, said Collins. Today’s consumer is much more likely to seek to engage with a drugmaker or healthcare company online.

“Social has been a complete game changer,” she said. “Companies are much more than a product or a pill but about creating a two-way dialogue and creating that conversation with their patients.”