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April 23, 2015

Does 'raising awareness' about a disease actually help?

Daily Briefing

    An HHS database lists more than 200 official, annual "health awareness "days, but recent research finds many of these causes lack the strategy to effectively capitalize on the increased publicity that follows, The Atlantic's Julie Beck writes.

    In order to calculate the efficacy of health awareness projects, Jonathan Purtle, an assistant professor at the Drexel University School of Public Health, and public health consultant Leah Roman began an investigation.

    "We both kind of anecdotally observed that there seem to be more [awareness days] than ever," says Purtle, adding, "We asked ourselves, has anybody ever evaluated these things, do we know if they're effective at all?"

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    For their research, Purtle and Roman reviewed available written materials on "awareness days," but most of the materials were editorials or commentaries. In fact, they found just five studies that empirically gauged the effects of an awareness campaign, and the majority of those studies did not have rigorous study designs.

    Autism Speaks: A case study

    Liz Feld, president of not-for-profit advocacy organization Autism Speaks, says the group has seen tangible benefits from World Autism Awareness Day, which took place April 2.  So far this Autism Awareness Month, Autism Speaks has raised more than $10 million and signed up 50,000 individuals on the company's website. In addition, nearly 18,000 buildings around the world were lit in blue on April 2 as part of the movement.

    According to Beck, the organization's main goal with its awareness day was to send a message and get the public to start talking about the issue.

    "One-third of people who live with autism are nonverbal," says Feld, adding, "The power of a global blue-light movement is very strong. On that day, that is the collective voice of the autism community… blue lights are really a voice." She notes that getting people engaged in awareness efforts creates "a sense of community... People like to be a part of something...that [is] bigger than themselves."

    Still, Purtle questions how the campaign would "trickle down into some sort of positive outcome for people with autism."

    "You've got to follow it up with something else," Feld explains. As part of the awareness campaign, Autism Speaks asks people to sign petitions and fund research initiatives.  "There are a lot of moral imperatives," she says, but an "effective awareness day has got to give people a window into what a real person who's living with autism is going through."

    The downside of 'awareness'

    "Awareness days wouldn't be so popular if there weren't an appetite to address health problems," Beck writes.

    But campaigns' tendency to focus on individuals' choices can promote unproductive ideas about the causes of health problems, Purtle argues. Many people believe "it's really people's choices that determine their health outcomes and if they're unhealthy it's either... they made bad choices ... or they're just unlucky and have some genetic thing," he says. Purtle adds, "That really flies in the face of the complexity of the various forces that influence a person's health and a population's health."

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    Moreover, Purtle says that many people believe having knowledge about a problem is the same as acting on that information. He notes it's not enough to say "this is a problem, and we need to do something about it."

    Purtle says many of the diseases and issues promoting awareness call for addressing environmental, societal, and economic factors—things that cannot be remedied solely with knowledge.

    He concludes, "I think if more people understood that, perhaps we'd see awareness days looking a little bit different." He suggests that the ideal awareness day would spread information about a certain condition and associated risk factors, as well as policy changes that could help individuals living with the condition (Beck, The Atlantic, 4/21).

    The takeaway: While awareness days highlighting specific health conditions are a good way to shed light on less visible issues, organizers must take steps to include tangible actions to help resolve the problems.

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