Facebook Is Revolutionizing The Search For An Organ Donor, But Is It Fair?

This week The New Yorker ran a fascinating article called, "To Donate Your Kidney, Click Here".  More and more people are turning to Facebook to try and find living organ donors.  And while many have found tremendous success using this strategy, the article highlights the serious ethical concerns that now face the medical and public health communities in light of this trend.

Concerns About Disparities

The Advocates

While data show that Facebook is the most popular social networking site among online adults, we do not know how social media advocacy skills translate across demographic variables.  In The New Yorker article, Dr. Dan O'Connor of Johns Hopkins University asks "“Whenever you’re using platforms like Facebook, the question is, what kind of person, what demographic profile has the time and energy and communication skills to make this work?” [bolding added]

The Donors

Dr. Michael Shapiro (who chooses not to perform kidney transplants on donor-recipient pairs who met through online advertising) said, “It’s not hard to imagine that if you’re attractive and young and appealing, it’s easier to get people to donate to you than if you’re short or ugly or have a hunchback. And that’s not the way we want the system to work." [bolding added]

While there is limited research regarding Facebook donor-recipient matching, research out of Loyola University offers support for Dr. Shapiro's concerns.  After examining Facebook pages seeking kidney donation, the researchers found that certain types of pages (i.e., white patients and those with more posts) were more likely to have people come forward and get tested to be a possible donor.

Leveling The Playing Field

As with any health or access disparity, public health needs to innovate solutions to narrow the gap.  The New Yorker article discussed Dr. Andrew Cameron (a transplant surgeon at Johns Hopkins) who is working on one possible solution.  He is developing a smartphone application which may level the playing field for patients/families for which social media tools and advocacy resources are less intuitive or accessible.  The app would offer a “template” for those in need of organs to tell their story, and would provide a system for those users to connect directly with transplant centers and social media resources.

What Do You Think?

• Does donor matching on Facebook provide an advantage to certain demographic groups?
• What can we do to level the playing field for those patients/families with (1) limited access to social media tools or advocacy skills? (2) stories that may be "less attractive" to the public?
• Are you surprised that some surgeons (e.g., Dr. Michael Shapiro profiled in The New Yorker) choose not to operate on pairs who meet through online advertising?

Bonus Read: This is not the first time that Facebook has been part of the organ donation dialogue.  Last May I wrote about Facebook's "share life" tool, which allows users to share their organ donation status on their timeline.  Since then, research has shown that the tool is effective in increasing donor numbers.

Facebook Revisited: Does the Platform Help or Hurt Users (or Both)?

The benefits and challenges of social media for public health are a frequent topic on Pop Health.  For example, I've explored the influence of these platforms on emergency response, increasing the number of organ donors, and health activism.  However, one of the debates that I hear the most among public health colleagues relates to Facebook.

Does it isolate users?  Does it connect users?  Does it do both?

Earlier this year, my colleague Elana Premack Sandler explored this debate as it relates to loneliness.  Inspired by a feature in the Atlantic Magazine, Elana asks key questions like, "Is Facebook part of the separating or part of the congregating?"  She also mentions concerns about how Facebook (and other social media platforms) affect our social skills and therefore our friendships.

I thought of Elana's writing as I read a new post on the Atlantic website today, "Are Your Facebook Friends Stressing You Out?  (Yes.)".  This post highlights a new report out from the University of Edinburgh Business School.  The report caught my eye because it identified a very specific cause of stress for Facebook users.  The more groups of "friends" a user had (e.g., family, real life friends, co-workers, etc), the more anxiety they had because there was a greater chance of offending someone with their posts.  The report stated that the greatest anxiety came from adding parents or employers as Facebook "friends".  As Megan Garber writes so eloquently in her Atlantic post, the stress comes from Facebook forcing users to "conduct our digital lives with singular identities".  The way we speak or act around family or friends or co-workers must jive on Facebook, or we run the risk of offending someone.  I'm sure many of us saw this conflict a few weeks ago when political and election posts ran rampant on Facebook!

The anxiety described above is interesting, because ideally what we would hope is that Facebook provides a source of social support to users.  Social support occurs when one is cared for by others (via emotional, tangible, or informational support).  The presence or absence of social support is a factor related to public health issues, such as suicide.    

So after reading through the various posts/articles, what do I think about my opening questions about Facebook?

Does it isolate users?  Does it connect users?  Does it do both?

I think it does both.  I have seen it do both.  For example:

Isolation:  I have spoken to friends and colleagues who feel terrible about themselves or their lives after scrolling through their Facebook news feed.  A friend with chronic illness feels isolated hearing about the latest vacation or new job taken by her "friends".  A friend suffering from infertility can't bear one more picture of a "friend" and their newborn.  I think much of this results from the "whitewash" that many of us put on Facebook.  We often paint a picture for our Facebook friends, full of engagements and babies and fun events.  

Connection:  Earlier this year I watched a suicide intervention unfold on Facebook via the comment section under a post.  A friend of a friend posted a suicidal message on their Facebook wall.  Within minutes, "friends" reached out in the comments.  However, not only did they "speak" to the person, but they interacted with each other and followed up in real life.  One comment read, "Did someone go to his house?"  The next comment read, "I went to his house and I called his parents".  After he was taken to the hospital, a comment was posted to inform all the friends that he was safe.  As a public health practitioner that worked in suicide prevention for years, I was amazed with what I saw. 

So what can we do to reduce the isolation/anxiety and increase the connection?  You can certainly start by exerting your control over your Facebook account.  For example:

• Create a policy about "groups of friends" that you accept into your circle.  I know lots of people that do not accept requests from co-workers or parents.  They make it clear to the individual that it is nothing personal, they just have minimal friends with which they share intimate information.
• Use the privacy settings!  You can control who can see your posts.
• Find and use the unfriend button!  I have done this frequently.  If someone posts messages that are offensive or disrespectful regarding something that I've posted- I get rid of them quickly.
• Take a break from Facebook.  If you realize that Facebook is making you feel bad about yourself, take a break or disable your account.  Use that time to connect with your in real life (IRL) friends or family.

Tell me what you think!  

• Does Facebook isolate and stress us?  
• Does Facebook connect us?
• What other strategies can help to reduce the isolation and increase the connection on Facebook or other social media platforms?

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?