Facebook Adds Organ Donation To Timeline: Should We "Like" It?

Typically, I post on Wednesdays.  However, with so much chatter about Facebook's announcement, this felt more timely.
Starting today, you can add your organ donation status to your Facebook timeline using the "share life" tool.  If you are already registered, you can share your story about where and why you decided to become an organ donor.  If you are interested in registering, you can follow links to official donor registries.

ABC has been a primary news source for this announcement, interviewing Facebook CEO Mark Zuckerberg, demonstrating how to use the "share life" tool, and discussing myths and facts about organ donation.

Scanning Facebook and Twitter today (especially among my public health colleagues), the response seems to be overwhelmingly positive.  From my perspective, the Facebook tool has the potential to be effective (i.e., increasing the number of registered donors) because it focuses on action.  The tool is not for education.  The tool actually links to registries so that you can sign up.  The tool aims to increase the visibility of already registered donors, which in turn will influence others to sign up.  The tool aims to decrease the stigma and secrecy of talking about end of life decisions by putting it right up there next to your birth date and relationship status.  This may also influence others to sign up.  In previous posts, I have written about public health campaigns that use social media in order to reduce the stigma around an "undesirable" topic (e.g., STD testing).

Although I am 100% supportive of the mission of increasing organ donors and am familiar with the dire need for donations (e.g., 18 people will die each day waiting for an organ), I have a few reservations about "share life":

In today's New York Times coverage of the Facebook announcement, I read a sentence that concerned me (I added the underlining):

"The company announced a plan on Tuesday morning to encourage everyone on Facebook to start advertising their donor status on their pages, along with their birth dates and schools — a move that it hopes will create peer pressure to nudge more people to add their names to the rolls of registered organ donors".

I consider declaration as an organ donor to be a medical decision.  In public health and medicine, we strive for patients and the public to make such decisions from a position that is informed and lacks pressure from physicians or family or friends.  Therefore, I have reservations about people signing up without educating themselves first and/or because they feel pressure on Facebook.  Just a few weeks ago, I posted about "hashtag activism" and how easy it has become to get involved in causes via social media.  Are we as thoughtful when we participate in causes on Facebook as when we participate in real life?

My other ongoing concern is regarding the proper security and use of personal information that is gathered by Facebook.  Will your organ donation status result in particular advertisements being sent your way?  I remember updating my Facebook status to "engaged" 4 years ago and being overwhelmed by the wedding planning advertisements on my page.  There is increasing public outcry regarding privacy settings and the personal information you enter being used for Facebook to attract advertisers and other business opportunities. 

Again, I am 100% supportive of the organ donation mission.  I think the reach of Facebook offers tremendous public health opportunities (including the possible elimination of long wait time for organs).  While that is an attractive outcome, we must always remember to focus on the ethics of the process as well.

What do you think?

•  Facebook has become directly involved with several public health issues (e.g., suicide, bullying, organ donation).  Are their strategies effective?  Why or why not? 
• Do you foresee any unintended consequences from the organ donation tool?
• Will you include your organ donation status on your Facebook timeline?  Why or why not?

 

"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?