Friday, November 01, 2013
Lebanon — Children with tubes sticking out of their arms, some bald from chemotherapy treatments, danced alongside nurses and doctors and bellowed an uplifting pop song called Roar.
Within days of its Oct. 21 premiere on YouTube, the video produced by the Children’s Hospital at Dartmouth had more than 1 million views and attracted high-profile media attention. The kids who starred in the nearly 4 minute-long video were getting interview requests from CNN and People magazine.
What began as a simple idea to promote the CHaD Hero Half Marathon took on a life of its own, as the hospital was besieged by callers who wanted to donate money or volunteer. The young patients, their parents and the Dartmouth-Hitchcock staffers who helped make the video said it sang a message of empowerment for sick children who refused to be defined by their diseases, and presented a positive portrait of the work being done at the Upper Valley’s only children’s hospital.
Many people viewed it as an absolute good.
“This video shows four types of people: The doctors who are tactical geniuses who strive for tomorrow, the nurses who are guardian angels watching over their flock, the parents who are the believers that know and see tomorrow through hope, and the warriors who are the patients who continue to fight for their future,” said a commenter on YouTube named SpaceMountain . “All of these people will be remembered for their perseverance, spirit, and resilience because they inspire.”
As fresh as it seem s, the video is not the only one of its kind on the web. Other children’s hospitals have created similar YouTube sensations before CHaD’s, including one in Minnesota set to the Sara Bareilles song Brave and Seattle Children’s Hospital patients singing the Kelly Clarkson song Stronger.
But as these videos attract millions of viewers and bring in new donors for the institutions behind them, hospitals will have to consider the unintended consequences from putting patients’ images online and confront ethical questions that they may not have previously considered.
“If any organization can now be a publisher, it brings along with it questions of ethical boundaries of being a publisher,” said Sam Ford, co-author of Spreadable Media, a book published this year about how media are shared in the digital age. “And all sorts of ethical considerations about how you approach your story telling. ...When not-for-profits, companies and others get in the business of creating stories in video and text, there are a lot of questions that they may not have considered.”
First is the issue of consent, which is as much a legal issue for hospitals as an ethical one, said Ford, who is affiliated with the MIT Program in Comparative Media Studies. It appears obvious that the people lip synching to a pop song were fully aware that they were being filmed, but ethically, hospitals would also want to make sure that the patients and their parents understood how the video would be used.
Dartmouth-Hitchcock staff obtained permission of everyone who appeared in the video, said Holly Gaspar, a child life specialist who helped lead the video project. Several people declined, she said, and their wishes were respected.
Meghan Richardson, a 16-year-old Andover, N.H., resident, has become among the most recognizable performers, often identified by her purple and blue tie-dyed T-shirt. She and her mother were told a basic concept of the video before agreeing to participate, but neither had a clue that it would end up being seen by millions of people. Still, Richardson has no regrets.
“It was so worth it,” Richardson said. “I didn’t have any hesitation at all because it helps the children of CHaD have more recognition and have their own voice.”
“I think it’s a good thing,” said Stephanie Hayden, an Enfield resident whose son, 10-year-old Caleb Hammond, appears in the video. “But I didn’t think it would blow up like it did.”
Indeed, only one week after its YouTube launch, the Roar video had more than 2 million views (and was at 2.3 million Thursday evening), and such success can have consequences that neither the hospital nor patients anticipated.
Hayden said her son has felt overwhelmed by his new celebrity and hasn’t exactly embraced the attention. At Dartmouth-Hitchcock Medical Center last Friday, Caleb was repeatedly stopped and asked about the experience by passersby. At one point, he just put his head down and ignored people, Hayden said.
“He’s overwhelmed a little bit because everywhere he goes, somebody notices him,” Hayden said. “He just doesn’t know how to react.”
Originally, the Roar video was intended to be used in conjunction with the CHaD Hero Half Marathon, said the film’s co-creator, Chris Cammock, a photographer and designer in Windsor. Beyond showing the faces of the child patients set to a pop song, Cammock didn’t have a particular message or lesson to impart. She spent a day filming the children at the hospital and said she wanted only to let the images speak for themselves.
“I didn’t necessarily set out with this is what I wanted to say,” said Cammock, whose brother works at CHaD and who created the video pro bono. “I just think there’s a lot of power in these kids’ eyes and in their caregivers.”
One of the challenges with media that can be distributed online, or what Ford calls “spreadable media,” is control over how images are used. The video could be shared in a variety of online forums and potentially subject to manipulation or even outright attacks that the participants never imagined.
“Once content is published, you have limited control about how those images could be used over time in ways other than you intended,” Ford said. “That is not to say whether there is a right or wrong here, but especially when we’re talking about capturing the image of kids and putting them online, part of the tradeoff for getting content to spread is the dark side of spreadability. That you lose control over how this video may spread over time, as people might mash it up, make use of it, etcetera.”
Even if the context in which the images are used isn’t blatantly inappropriate, it could “go beyond the spirit in which the parents and children initially agreed to participate in this,” Ford said.
This is not to say hospitals should never create videos like this, he said. But they must weigh some questions before rushing to publish, because there could be unintended consequences.
So far, the response online has been overwhelmingly positive. The video has received more than 32,500 “likes” and only around 400 “dislikes” on YouTube. Though a few online commenters have made derisive jokes, the video has many more supporters who have been quick to call out comments that seemed too negative, most of which were subsequently removed.
More than a year after Seattle’s video was launched, the response has been positive and encouraging, said Doug Hawkins, an oncologist at the children’s hospital. As of Tuesday, it had nearly 3.5 million views.
Hawkins is not aware of any abusive use of the video. Even if he were, the hospital is not in a position to do much about it, as the Stronger video was an independent project done by a patient there. The hospital endorsed it, but it was not the entity that created it. And just like with the CHaD video, few people at Seattle Children’s Hospital anticipated the response it would receive.
“I think we didn’t know what to expect,” said Hawkins. “What happened was all positive.”
Among the positive developments was that the hospital saw a rise in donations. The foundation that supports Seattle Children’s Hospital received more than $1,000 in donations related to the video, according to a hospital spokeswoman.
New donors have been coming to the children’s hospital in Lebanon, too.
The video wasn’t intended as a fund- raising opportunity, said Dartmouth-Hitchcock spokesman Rick Adams. But after the ChaD video launched, the hospital was inundated with calls from people who wanted to give money. So, Dartmouth-Hitchcock added a link where people could click to donate. As of Thursday, the hospital had collected around $19,000 as direct result of video, Adams said. Nearly everyone who has given was a first-time donor to CHaD.
“If it moves somebody who’s not aware of CHaD to support us, that’s a good thing,” Adams said.
The parents, patients and filmmakers agree. Richardson and her mother, Sue Whalen, both said they were happy to have the hospital benefitting financially from the project.
“As far as the money coming into CHaD, that definitely was not our intention and I didn’t even perceive of that or think of that,” Whalen said. “But if people are donating, then I appreciate it and I thank them and all that’s going to do is further what they can do for the kids now or the kids coming through CHaD later on.”
A committee of hospital leaders, community volunteers, family members of patients, members of the Friends of CHaD organization, physicians and staff will decide how the donations will be spent, Adams said. And both Whalen and Hayden, the Enfield resident, said they trusted the hospital to invest the funds in appropriate ways.
If a hospital has any expectation that such a video will lead to financial gain, however, that is something that should be discussed up front, not after the video is published, Ford said.
“It certainly raises questions about the stakes of how, if you were an organization like this, you would talk to the people who participate in this video,” he said. “This is a case where the average family here might not necessarily want financial compensation for participating in this video. The reward they get for in some small part telling their story might come through participation. But you want to make sure that’s an educated decision.”
These were not conversations that many hospital staff in Seattle or at Dartmouth-Hitchcock seemed to have before posting their videos. The projects were small, humble affairs that grew faster than anybody expected. But if other hospitals are to produce similar videos, they should take these questions into consideration, Ford said.
Sociologists interviewed for this story said they had no concerns that CHaD was exploiting patients or portraying them inappropriately.
“What I think is good about this is that it’s not portraying them as victims,” said Denise Anthony, an associate professor of sociology at Dartmouth College, who studies health care issues.
Still, she said that if such videos will be used as fund-raising opportunities for hospitals, that point should be made clear to patients before they agree to participate.
“That is always the ethical concern,” Anthony said. “Maybe it’s even more important when (the video) is so clearly using real kids. The ethics of this should be very clear and up front.”
For now, hospital staff and the patients are pleased to be part of an online phenomenon, the benefits of which have exceeded their expectations. It has provided a boost in morale to the hospital employees and patients, hospital officials said, and been an inspiration to millions of viewers.
“We really had no idea how big this was going to get,” said Gaspar, the child life specialist. “And I think the kids are so excited about kind of being mini-famous on the web. And I think really it comes back to these kids feeling empowered and really not being identified by being the sick kid anymore. Instead, they’re this YouTube sensation. And I think that really makes some of these kids proud.”
Chris Fleisher can be reached at 603-727-3229 or cfleisher@vnews.com.