• No makeup duckface selfies: Are they really raising awareness about disease and charitable causes as intended? (iStockphoto/Getty Images)Source: iStockphoto/Getty Images
Are social media ‘disease awareness’ campaigns about you or those living with the disease?
Jo Hartley

3 Oct 2016 - 2:29 PM  UPDATED 4 Oct 2016 - 10:48 AM

Social media health campaigns have got us all talking.

We’ve seen them in our news feeds, liked them, shared them and even participated in, but are they really about the disease?

With the aim of raising awareness and funds for illnesses, admittedly there have been some notable success stories to-date. 

For example, both the ‘Ice bucket challenge’, which raised awareness of amyotrophic lateral sclerosis, and the ‘No make up selfie’, which raised awareness for cancer research, went viral.

These campaigns were also financially lucrative. In fact, funding from the ice bucket challenge resulted in the discovery of a new gene to target for further drug development. Despite this, research after the challenge found that the majority of participants didn't actually donate.

In the UK, only 10 percent of those who participated donated, and it was a similar case in the US.

“Are we using social media for true good or just giving lip service to what we think we ‘should’ be caring about?”

“Slactivism relates to actions with no real practical effect that makes someone feel they’ve contributed,” says social media psychologist, Jocelyn Brewer.

“It’s usually associated with online sharing or challenges regarding certain causes, and the (false) idea that by ‘liking’ or participating, it will make a difference.”

While Brewer notes that campaigns do raise awareness, she questions their effectiveness in creating long-term change or behavioural activation around the issue. 

“Are we using social media for true good or just giving lip service to what we think we ‘should’ be caring about?” she questions.


Melissa Finch* is currently battling brain cancer. She thinks participants in social media campaigns aren’t always doing it to pay lip service.

However, she wonders how much participants think about the specific disease or illness beyond the campaign.

“I wonder if they think about their contribution to awareness, and also wonder how much others link their friend’s participation with a particular illness,” she says.

On a personal level, Fitch believes that awareness and funding could be better handled to actually benefit those suffering.

“Until you’re thrown into this situation, it’s very difficult to understand how a diagnosis can throw your world into an absolute spin,” she says.

“Not only is there a need for more money for research, but also for directly providing financial support for sufferers.”

“Until you’re thrown into this situation, it’s very difficult to understand how a diagnosis can throw your world into an absolute spin."

So should we focus on social media campaigns that attract the attention of high profile decision makers?

A 2016 ‘Heart on Your Sleeve’ campaign for rheumatic heart disease aimed to do exactly that.

“We wanted a campaign that generated public awareness, but specifically gained the attention of politicians with the power to provide funding,” says Janice Forrester, spokesperson for the campaign. 

As a significant cause of disease among Aboriginal and Torres Strait islander children, the campaign encouraged participants to draw a heart on their arm. 

“We wanted to communicate that, while this disease has been eradicated in most of Australia, indigenous communities are still suffering, and it’s a problem that needs addressing,” says Forrester.

The campaign succeeded in attracting politicians’ attention and, as a result, direct funding was received for an ongoing health strategy until 2017. So, moving forward, could the public learn from this campaign?

“I think we need to be more conscious about what and how we share on social media,” says Brewer. 

“We might feel that ‘liking’ or participating is an effective way to contribute, but perhaps we need to assess other more meaningful ways to help.”

“Like with Syrian refugees, we could consider what actions to take, beyond donation and sharing Guardian articles.”

If we don’t adopt a different approach, Brewer says that we’ll simply keep ‘liking’ or sharing things that pull on our heart strings, but then return to tweeting along to the Bachelor!

In saying this, Brewer feels that the wave of using social media this way has peaked. 

“The landscape has become so saturated that it takes more and more to get campaigns to go viral and global campaigns need huge strategy and backing of brands to get any significant traction,” she concludes.

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