"Hashtag Activism"- Is It Working For Public Health?

Last year on Facebook, my timeline was suddenly filled with status updates of just one word.  Red. Black. White.  "What is this?" I thought to myself.  It turned out that it was a breast cancer awareness campaign.  Facebook users were listing their bra colors to help prevent breast cancer.  And there are tons of these public health campaigns all over social networking sites.  "Like" our Facebook page to prevent cancer!  "Re tweet" this message to prevent heart disease!  For those of you familiar with my blog, you'll remember that I think "raising awareness" is the most counter-productive phrase used in our work.  It is not specific enough to measure for change and (on its own) it will not change health behaviors.  

So I thought of my frustration with these campaigns as I read a great article in the New York Times this week called, "Hashtag Activism, and Its Limits".  David Carr writes eloquently about the ease of supporting a variety of causes:

"If you “like” something, does that mean you care about it?  It’s an important distinction in an age when you can accumulate social currency on Facebook or Twitter just by hitting the “like” or “favorite” button.

The ongoing referendum on the Web often seems more like a kind of collective digital graffiti than a measure of engagement: I saw this thing, it spoke to me for at least one second, and here is my mark to prove it".

I like that David brings up the question of engagement here.  Many of these public health campaigns on social media just strive for "likes" on Facebook or "hits" on a website or "re tweets" on Twitter.  And not that they mean nothing, but those measures are just the tip of the iceberg in measuring audience engagement.  And audience engagement (beyond "raising awareness") is what could actually lead to public health activism, knowledge change, and ultimately behavior change. Leslie Lewis gives a great overview of Return on Engagement (ROE) on her blog "digital.good".  According to Leslie, ROE measures tend to be more qualitative and measure message reach and spread.  In addition to "likes", ROE also measures things like brand/campaign awareness, comments, shares, and returning visitors. 

I certainly do not think that all public health campaigns delivered via social media are ineffective.  On the contrary, I think that social media is an incredibly powerful tool for public health.  David Carr makes similar comments later in his article.  Challenging his initial skepticism of web activism, he lists several recent "campaigns" that have been quite effective (e.g., the reversal of Susan G. Komen de-funding Planned Parenthood).

However, to use social media effectively in public health, we must be strategic and we must evaluate.  

Some sample questions that I ask program planners:

• What is the goal of the campaign?  (e.g., to drive traffic to your website; increase hotline calls; increase specific behaviors like breast self examination?).
• How will the campaign activities (logically) lead to the desired goal/outcome?
• Are your goals/outcomes measurable?
• Have you thought about evaluation before launching the campaign?
• Besides the ideas listed above, how are you measuring "audience engagement"?

 
 What other questions should we be asking?

The Vaccine War: Public Health vs. The Media

A few weeks ago, I had the pleasure of speaking with Laurie Edwards, a writer and blogger who examines chronic illness, healthcare, life balance, public health history, and everything in between.  Among other topics, we talked about the role of social media and mainstream media in the vaccine debate.

So I thought of that conversation as I watched last night's re-run of PBS Frontline's special "The Vaccine War" (originally aired April 27, 2010).  I highly encourage advocates on both sides of the issue to check it out.

The piece was quite balanced with interviews on all sides.  For example, we heard from vaccine advocate Dr. Paul Offit, bioethicist Dr. Arthur Caplan, anti-vaccine advocate parents in Ashland, OR (with one of the lowest vaccine rates in the country),  Jenny McCarthy and her colleagues at Generation Rescue who continue to argue for evidence of the link between vaccines and autism, and from parents of a girl who almost died at 6 weeks from whooping cough.

It explored possible contributors to the fear of vaccines and/or the lowering vaccination rates:

• 1998 Lancet article by Dr. Andrew Wakefield that linked autism to childhood vaccines (*This article has since been retracted and MANY U.S. and International epidemiological studies have found no scientific evidence of a causal link)

• A new generation of parents that are too young to know the devastating effects of vaccine-preventable diseases like polio.  One interviewee used a term that I really like- "Community Recollection".  As Community Recollection of these diseases disappears, we can become complacent.

• A false sense of security because many of these diseases are not seen frequently in the United States.  However, we forget that with the ease of air travel, borders are almost non-existent.  For example, the piece followed an outbreak of measles in San Diego that started when a non-vaccinated 7 year old from the US contracted it while vacationing in Switzerland and brought it home to classmates.

• The Internet.  While it also offers many positive benefits regarding healthcare (e.g., access to information/publications; online support groups and connections with a "community" of individuals with similar diagnoses)- it also has its potential downfalls.
• It can keep controversy alive- even after it has been disproven (e.g., the Wakefield article)
• False or unproven information can go viral and it is hard to retract!  They use the example of the youtube video of Desiree Jennings (a 25 year-old Washington Redskins cheerleader) that claimed that a flu shot caused her debilitating muscle disorder.  

So how can Public Health compete with the Media and the Internet?

• Let's not compete.  Let's collaborate.  Let's learn (either through our own capacity or collaboration) to effectively communicate public health information online.  Our biggest audience (the public) is not usually reading our peer reviewed journals or attending our annual conferences.  This is already starting to happen.  Public health organizations have active Facebook and twitter accounts, blogs, videos.  Let's keep going.  And let's train our public health colleagues/students in health communication.

• Let's remember to share the spotlight with celebrities and other spokespeople that have influence over the public.  Like it or not, the way people get their health information and make decisions is changing.  They do not just agree with doctors or scientists.  I almost always see these debates featuring Public Health (scientist speaking in jargon) vs. Celebrity/Parent with moving emotional story about their child being injured by a vaccine.  That is hard to compete with!  Believe it or not (because we seem to only hear from Jenny McCarthy), there are also pro-vaccine celebrities.  Jennifer Garner and Kristi Yamaguchi have been flu vaccine advocates.  Jennifer Lopez and Keri Russell have been pertussis vaccine advocates.  Let's make sure the public knows that. 

• Let's think about the framing and marketing of vaccination messages.  When the HPV vaccine is framed as a Cancer Vaccine for both boys and girls...versus an STD Vaccine for just girls/young women it is perceived very differently by the public.

Tell me what you think:

• What can we do to change the current "Community Recollection" about vaccinations?
• Other suggestions regarding how public health can collaborate with the media/internet sites to communicate more effectively with the public?

Tumblr Contemplates A New Policy Against Self-Harm Blogs: Let's All Weigh In

Tumblr is a popular microblogging platform.  It lets you share anything from text to pictures to video.  According to their website, the average Tumblr user creates 14 original posts each month, and reblogs 3. The "reblog" button on all Tumblr posts allows a meme to spread rapidly across thousands of blogs with just one click.

As with other social media platforms, tumblr has an enormous reach (18,878,347,183 total posts as of the time of this blog).  Therefore, it has great potential to help and hurt the public's health as it facilitates communication among millions of people.

A few weeks ago, Tumblr presented to its users a challenge (and possible solution) regarding blogs that promote self-harm.  Their users are being asked to weigh in on the policy.  I think that is a smart move.

Here is an excerpt from the Tumblr staff blog: 

Our Content Policy has not, until now, prohibited blogs that actively promote self-harm. These typically take the form of blogs that glorify or promote anorexia, bulimia, and other eating disorders; self-mutilation; or suicide. These are messages and points of view that we strongly oppose, and don’t want to be hosting. The question for us has been whether it’s better to (a) prohibit them, as a statement against the very ideas of self-harm that they are advancing, or (b) permit them to stay up, accompanied by a public service warning that directs readers to helplines run by organizations like the National Eating Disorders Association.

We are planning to post a new, revised Content Policy in the very near future, and we’d like to ask for input from the Tumblr community on this issue.

The blog goes on to say that they currently think the right answer is to implement a policy against pro self-harm blogs.  They aim to focus only on blogs that actively glorify or promote these behaviors. They also intend to start showing public service announcements (PSAs) on specific search terms like "anorexic" or "thinsperation".  It is unclear from their post how this policy will actually be implemented.  It would take enormous staff resources to comprehensively review their site and remove concerning materials. 

Other online and social media platforms have struggled with similar issues regarding how to respond to users that may be searching for or posting worrisome content.  Here are a few examples of other challenges and solutions:

• When someone uses Google or Yahoo to search for the term "suicide", the link to the National Suicide Prevention Lifeline is provided as the first result.
• In December 2011, Facebook began a new service that allows "Friends" to report concerning posts.  Facebook then sends an email to the person who posted the suicidal comment encouraging them to call the hotline or click on a link to begin a confidential chat. Note that Facebook does not troll the site itself, but instead waits for reports to come in.  
• Pop Health has previously posted about the debate regarding Twitter's duty to restrict hate speech vs. its duty to promote free speech among its users.

From these examples, you can see that there have been a variety of approaches to address potentially unhealthy or unsafe posts on social media platforms.  Sites can decide to be inclusive of all posts, they can let users police each other and report concerns, they can post resources in response to keywords, they can actively prohibit certain content...or they can use some combination of these strategies.

• What strategy or combination of strategies is best for the public's health?  
• If users are prohibited from posting, does that make them more isolated and less likely to connect to services?
• Should the overall health of the user group outweigh the health of that individual?

Tumblr is encouraging users to weigh in on their plan...so I ask you to both comment here and contact them at policy@tumblr.com.