Immunization advocates struggle to make themselves heard online


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By Brandy Zadrozny

In 2008, Vaccinate Your Family, the largest nonprofit organization in the country dedicated to immunization advocacy, had to stop posting videos on YouTube.

Known at the time as Every Child By Two, the organization used its massive video platform channel to publish interviews with doctors, public service announcements, and parent testimonials. Children who have died of vaccine preventable diseases.

But these messages were quickly sabotaged. According to Amy Pisani, executive director of Vaccinate Your Family, YouTube's recommendation system, which appears next to the videos and suggests what users should watch next, will direct viewers to anti-vaccination videos.

"When we put things on YouTube, it was followed by an anti-vaccination video," Pisani told NBC News. YouTube's recommendation system, powered by an algorithm that the company does not make public, has been criticized in recent years for favoring controversial and conspiratorial content. The company said it changed the system to designate more "authoritative" sources.

"They were crazy. Videos like "My child was hurt by DTaP" or "My child can no longer walk", every plot you can imagine would come after ours, said Pisani. "They actually started working right after the end of our video, so if you blinked for a minute, you would not know it's a new video."

"We became so frustrated with the recommendations that we moved them to Vimeo," a much smaller, YouTube-like video platform owned by the InterActiveCorp media conglomerate, Pisani said. YouTube has more than ten times the number of active Vimeo users and is the second largest search engine in the world after Google, which also owns YouTube.

The story of Pisani offers a window on the struggle that public health officials and their advocates face when trying to provide information about vaccinations on social networks, where advocates of immunization have spent more than a decade creating audiences and developing strategies to be in a good position. automated results and recommendations.

The anti-vaccination community is sticking to an unscientific conspiracy theory that childhood vaccines are toxic and cause many diseases and injuries, including autism, and spread these beliefs via YouTube, Facebook and other online platforms. The widespread prevalence of this misinformation on the platforms has led some parents to suspend or delay vaccination, which has led to an increase in the spread of preventable diseases, most recently a measles outbreak in the Pacific Northwest that, as of Sunday, had infected 70 people – mostly unvaccinated children.

The World Health Organization has included reluctance to vaccinate in its list of the top ten threats to global health this year. Although limited, recent research suggests that part of the solution to the public health crisis could be found on the same platforms that allowed the spread of myths about vaccines. A study published in 2017 in the journal Pediatrics revealed that a random sample of pregnant women who interacted with responsible vaccine information on social media was more likely to vaccinate their babies on time.

"Public understanding of science has evolved dramatically with the move from Google search to social media to get information about vaccines or other health information," said Joan Donovan, director of the Technology Research and Development Project. social change at Shorenstein Center of Harvard University. "And it's to their detriment."

While a valuable resource for questioning and debate, social media has also created traps for everyday users who may not have been sensitive to anti-vaccine theories before going to a social media group. Donovan said.

"The opportunity has turned into a threat," said Donovan. "Anti-vaxxers are looking for" momversation "groups. Because they know that new parents are usually novices who have not thought much about vaccines and who are very sensitive to scientific jargon because they do not have the control of information to sort the rest of the Internet. "

Donovan said the source of the unverified, unscientific information on vaccines was not just from overly shared parents, but often from highly motivated "snake oil vendors" who peddled books, merchandise and natural remedies. to vaccinate preventable diseases.

"Your true believers support anti-vaccineist information about an anti-scientific belief system, but you come across an entire group of people who monetize and sell products with a marketing system aimed at," he said. Donovan said.

After more than a decade and facing increasing pressure, YouTube announced this month a change of recommendation algorithm, stopping suggesting conspiracy videos like those that followed Vaccinate Your Family. YouTube has also prevented some anti-vaccine videos from showing ads and earning money, and has begun to provide more information on the threat of vaccine hesitancy. a window under the anti-vaccine videos.

In a statement to NBC News, a YouTube spokesperson called the disinformation about medical topics a "difficult challenge", citing their recent policy changes, adding that "like many algorithmic changes, these efforts will be gradual and more and more precise ". time."

Pinterest has removed all vaccine research results while the site offers a solution. And Facebook – which recommends anti-vaccination groups and allows anti-vaccination groups to target pregnant women and mothers in paid advertisements – said it was "working" on unspecified changes regarding the disinformation related to health.

Pisani said progress was welcome, but she thought the damage was done.

"We used to do so many useful and wonderful things," like helping parents who could not afford vaccines and informing doctors of barriers to access, she said. "Now, we spend most of our time dealing with misinformation. It's a constant battle. "

And on social media, advocates of vaccination seem to win.

Vaccinate Your Family Vaccinate Your Family's Facebook page has nearly 200,000 likes and followers, but the visibility or commitment of anti-vaccine pages and private groups is far below reality. Hundreds of thousands of users post articles on marginal health sites, commercial advice to avoid government-prescribed vaccines, and share memes by hitting vaccinating parents.

"Anti-vaccination groups are much more successful in using social media interactive features than where we can usually get health advice," said Naomi Smith, a lecturer at Federation University Australia, who studied the movement. anti-vaccination on Facebook. "Thus, the vaccination pages serve either as information repositories or reduce anti-vaccination claims, which do not lead to the emotional heart of anti-vaccination attitudes."

These attitudes are often based on parental concerns, Smith said.

"In addition, we must remember that these groups are not generally called anti-vaccine, they could be" safe vaccines "or" in favor of the choice of vaccine, "she said. appeal to the protective instincts of the parents and really appeal to the real pain caused by illness and death in children, which apparently has no adequate medical explanation. "

The National Vaccine Information Center, a deceptive and legitimate organization with 213,000 "likes" on Facebook, has been urging parents not to vaccinate their children since the 1980s. Stop Mandatory Vaccination, one of the largest anti-vaccination pages counting 127,000 "likes", is led by a social media activist who arranges crowdfunding to announce his messages to pregnant women on Facebook.

Although Vaccinate Your Family has more followers on Facebook than Stop Compulsory Vaccination, the content of anti-vaccines is moving much further. In the past two years, articles from the Stop Mandatory Vaccination website have been shared on Facebook over a million times, according to BuzzSumo 's social media analysis tool. The content of Vaccinate Your Family has been shared just over 1,000 times.

Larry Cook, the social media activist behind Stop Mandatory Vaccination, described the reason for this disparity, telling BuzzFeed News: "The baited advocates of the vaccine do not create content, Page and groups , which attract many followers on Facebook The line of thought is already the common conversation and agreement in the mainstream media and the public. "

Pisani said that they were trying.

"The people on our page are really engaged," said Pisani. "That's truly impressive. Of course, we have a lot of hindsight. We will post a message and ask the same people to make the same ridiculous claims. "

"Everyone has questions about vaccines," said Pisani. "We are polite to people who have questions. We are not facing them and we never discuss with anti-vaxxers. We just want to contact these people before they get into nonsense. "

Some amateur vaccine advocates are more than willing to get into the fray.

Stephan Neidenbach, a 38-year-old technology professor from Annapolis, Maryland, leads "We Love GMOs and Vaccines", a Facebook page that he created in 2014, does he have? said, to fight growing misinformation on Facebook.

At first, Neidenbach said that he was responding anonymously to the anti-vaccine content, but scientists, farmers, and doctors started following the page and sharing information.

The page – which now has 194,000 subscribers – is one of the many Facebook pages that respond directly and in-kind to the anti-vaccination pages. Users share reports on vaccine outbreaks and publish briefs and screen shots of anti-vaccine group messages, which they ridicule in their comments.

A recent article said, "If you are antivaxx and you see that I make fun of those who make it, I just want to say that I speak to you personally and hope you are offended because you are screwed. * stupid."

"That's what separates me from other organizations," Neidenbach said. "I'm not an organization and I'm not trying to run a non-profit organization. I am only a teacher. And I do not have to be as nice as in the classroom. "

"They have to worry about their professionalism," he said. "But we can do more incendiary things that the World Health Organization can not do. And the inflammatory thing, as you can see by anti-vaxxeurs, is doing well on Facebook. "

"I would like to find someone who is more experienced in the medical or scientific field, but I have not found anyone yet. I guess most scientists and doctors do not have the time to do that. For the moment, it does not require much effort. "

As platforms take steps to combat the spread of anti-vaccine content, Pisani hopes that Facebook and others will promote the reputable content of Vaccinate Your Family – even though previous attempts at collaboration have failed.

Pisani said that former First Lady Rosalynn Carter, co-founder of Vaccinate Your Family, had written a letter to Facebook's CEO, Mark Zuckerberg, on behalf of the organization, after Zuckerberg published a photo of him. with his little girl bearing the caption: visit – the time of the vaccines! "

"We wanted to work with him and his wife to discuss other ways to promote vaccines," said Pisano. "We did not ask him to fix the Internet or Facebook."

They did not receive an answer.

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