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.

Speaking in Lisbon on October 5

My friend Pedro Bastos graciously invited me to speak at a conference he organized in Lisbon on October 5 titled "Food, Nutrition and the Prevention of Chronic Diseases".  I will give two talks:

• "Ancestral Health: What is Our Human Potential?"  This talk will explore the health of non-industrial cultures in an effort to understand how much of our modern chronic disease burden is preventable, and it will briefly touch on one major aspect of non-industrial life that may protect against the "diseases of civilization".  This presentation will focus on age-adjusted data from high quality studies.  
• "Why Do We Overeat: a Neurobiological Perspective."  This talk will attempt to explain why most of us consume more calories than we need to maintain weight-- a phenomenon that is a central cause of morbidity and mortality in the modern world.  It will touch on some of the brain mechanisms involved in ingestive behavior, and outline a framework to explain why these mechanisms are often maladaptive in today's environment.

Pedro will speak about dairy consumption, vitamin D, and chronic disease.  

The conference is targeted to health professionals and students of nutrition, however it's open to anyone who is interested in these topics.  It's sponsored by NutriScience, a Portuguese nutrition education and consulting company.  Sadly, I don't speak Portuguese, so my talks will be in English.  

Access the full program, and register for the conference, using the links below:

Program

Registration

Panera Bread CEO Eats On $4.50 Per Day: Good for Public Health or Just Good for PR?

The issues of food insecurity and the Supplemental Nutrition Assistance Program (SNAP- formerly known as Food Stamps) are quite timely.  September is Hunger Action Month and the House has just passed a bill that will cut $39 Billion from SNAP.  Acknowledging this, I wanted to talk about the CEO of Panera Bread.  Over the past week, Ron Shaich has undertaken a well-publicized Feeding America SNAP Challenge.  His goal was to shop for meals with the daily average per person ($4.50) benefit provided by SNAP in order to get a sense of the challenges faced by those struggling to put food on the table.  Feeding America encourages those participating in the challenge to share their experiences in order to raise awareness of “this critical nutrition program”.  Ron wrote about his experience on his LinkedIn Blog from September 9-20, 2013.

I thought his initial posts did a good job of outlining realistic goals:

• (1) To help bring awareness to the issue [I’ll take it- even though all Pop Health readers know I hate the term “awareness”] and 
• (2) Spark deeper conversations about food insecurity and possible solutions.  

Ron also highlighted an important caveat: His experiences from the challenge week are not meant to provide an authentic representation of food insecurity in America.  He understands that the issue is much more complex.  Over the course of the week, he discussed how his shopping and eating habits changed during the challenge.  For example, he visited a supermarket known for their low prices.  He also swapped out typical fresh goods like yogurt for “filling” foods like grains.  He documented the mental and physical side effects of his altered diet such as fatigue, irritability and resentment.  Some of his major take-aways from the challenge were:

• (1) One week is not sufficient to truly understand food insecurity, 
• (2) Food dominates your thoughts when it is not readily available, 
• (3) Increased empathy for those who struggle, and 
• (4) The importance of eliminating judgment and preconceived notions about those who are food insecure and/or require assistance from the SNAP program.

My thoughts:

• The Challenge and blog posts did not reveal anything unexpected; however it is worth it to read his posts just for the reader comments.  I am always impressed with how social media can solicit engagement and dialogue about public health topics.  While some readers were very supportive and applauded Ron for his efforts, others were quite critical- highlighting important limitations of his undertaking.  For example, its simplicity.  Readers pointed out that it is not just about food insecurity.  It is the stress of having your home, food, job, and transportation be unstable all at once.  They also pointed out how easy it was for him to jump in his car to visit a less expensive grocery store.  Families that are limited by transportation and geography do not have that option.   

• For me, this simplicity was highlighted in the juxtaposition of Ron’s SNAP challenge with many of the photographs that he used to accompany his blog posts.  For example, on day #4 we see Ron cooking his inexpensive dinner in a gorgeous kitchen.  On days #5,6,7 we see Ron eating in his beautifully outfitted office and building kitchen.  

• The readers/commenters did a great job (better than Ron in my opinion) of highlighting community and society-level contributors to food insecurity.  They discussed implications of current minimum wage pay.  They discussed families stuck “in the middle”- not qualifying for SNAP but not making enough money for their families to eat.  They discussed the underemployed- those working multiple low-paying part-time jobs without benefits.  They discussed how the culture of our country has changed- citing examples from past generations when employees were highly valued.  They discussed the high cost of food- and the lack of healthy options for those living on a strict budget.  I was especially moved by the first comment on his day #5 post.  The comment comes from a former Panera worker who left after 4 years due to low wages that rendered her unable to support herself.  She writes that “many employees at the stores I worked at are food insecure, as well as myself.”  While she acknowledged Panera’s philanthropic efforts, she asked Ron “why not look in your very own kitchens for people to help as well?”   

• I also took note of Ron’s communication channel selection.  He used his existing blog on LinkedIn.  I’m hoping to track down reliable data on the demographics of LinkedIn users (e.g., education and income levels) so that I have a better sense of his targeted audience.  According to Pew Internet research, only 20% of online adults use LinkedIn (as of August 2012).  Therefore, it just made me wonder: who might be left out of the conversation due to the blog’s location?  [*If any readers can share a reliable data source on demographics of LinkedIn users, that would be great!]

• Since Ron’s goal is to spark deeper conversations about food insecurity and solutions, only time will tell if his company's actions will change as a result of this SNAP challenge.  Hopefully they will build upon existing efforts (like Panera Cares) to help address food insecurity at the community, society, and policy levels.

What do you think?

#NotDeadYet: Slate Sparks An Awesome Online Discussion of Life, Medicine, and Public Health

Last Thursday Slate, a daily web magazine, kicked off a series on life expectancy.  I highly recommend taking the time to read the articles, which cover everything from notable public health advances to improving maternal/child health outcomes.  I was very pleased to see many public health organizations sharing these articles with their followers.

While the content was enough to draw me in, I was particularly intrigued by the online dialogue that was sparked by this series.  Over the past week, my Twitter feed has been filled with colleagues participating in the discussion using the hashtag #NotDeadYet.  In the series' first post, "Why Are You Not Dead Yet?", Laura Helmuth explores why life expectancy has doubled in the past 150 years.  At the end of the post, Laura asked readers to send their #NotDeadYet survival stories to Slate's twitter or email accounts.  A selection of the submitted stories ran today to wrap up the week-long series on life expectancy.

With so many newspapers and blogs (mine included) heavily depending on the comment section to initiate discussion, I was intrigued by the idea of starting an accompanying Twitter hashtag thread.  Impressed by the high participation rate just on my own feed, I reached out to Laura Helmuth to gather more information about her dialogue with readers.  She was very gracious to respond to my questions during what I assume has been a very busy week with the series!    

She shared that Slate received more than 200 emails from people sharing their stories (some of them quite elaborate). They also received about 800 responses on Twitter.  In terms of story content:

• About a quarter of the emails concerned childbirth- women who would have died giving birth and people who would have died when they were born. 
• Many of the Twitter messages were also about childbirth, including a lot of men who tweeted that they would be childless widowers right now if it were not for modern medicine. 
• Slate also heard from a lot of people who survived a burst appendix. Lots of people were saved from nasty infections by antibiotics. And some had gruesome accidents that were patched up in surgery. Lots of people have had heart surgery. Many people credited their anti-depressants for keeping them alive. A surprising number mentioned that they were treated with antivenins for snakebite! 

Laura noted that this hashtag thread was especially heartwarming because "people were taking a moment to share their scariest stories and express gratitude that they’re ALIVE".  She also said that "it’s a great reminder that so many of the people we know would be dead if it weren’t for treatments we sometimes take for granted". A big thank you to Laura for sharing these responses and her reactions!

After putting this post together, I have two messages- one about the content and one about the strategy that Slate used for communicating this story.  

• (1) It is important to look back and inventory the medical and public health advances that we take for granted.  Last year I wrote about the wonderful Frontline documentary, "The Vaccine War".  When discussing fears of vaccination and the decrease in childhood vaccination rates, the documentary noted that this new generation of parents 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.  We are seeing the devastating results of this complacency with outbreaks of preventable disease (for example the outbreak of Measles just a few weeks ago in Texas). 

• (2) We in public health should take note and learn from the strategies that Slate has used to engage readers.  We are always looking for ways to initiate conversation beyond the articles we publish or the classes we teach or the webinars or twitterchats that we facilitate.  A few observations:
• The hashtag thread allowed them to take the discussion beyond the comment section onto Twitter.  
• Hashtags are easily searchable, so new participants could quickly be gained that did not originally follow or read the magazine.  
• The hashtag #NotDeadYet was innovative and "catchy" not boring like #PublicHealthAdvances.  
• Readers also had an incentive to share their stories, since Slate was selecting the top 50 to wrap up the series.   

I'd love to hear from my readers!

• Did you read the Slate life expectancy series?  Reactions to share?
• Have you tried similar strategies to engage readers with the content that you distribute?  Success stories or lessons learned to share?

Research Notes: Alcohol Brand References in U.S. Pop Music

Today I'm launching a new feature on Pop Health called "Research Notes".  This feature will highlight new peer-reviewed research that integrates public health and pop culture.

Researchers from the Boston University School of Public Health and the Johns Hopkins Bloomberg School of Public Health have recently released a study that examined alcohol references in popular music.  The study is published early online in the journal Substance Use & Misuse:

Alcohol Brand References in U.S. Popular Music, 2009–2011

Michael Siegel, Renee M. Johnson, Keshav Tyagi, Kathryn Power, Mark C. Lohsen, Amanda J. Ayers and David H. Jernigan

(Posted online on August 23, 2013; doi:10.3109/10826084.2013.793716)

The study highlights several interesting findings:

• Four alcohol brands (Patron tequila, Hennessy cognac, Grey Goose vodka, and Jack Daniel’s whiskey) accounted for more than half of alcohol brand mentions in the songs that mentioned alcohol use in Billboard’s most popular song lists in 2009, 2010 and 2011.

• Alcohol mentions were most common in urban songs (rap, hip-hop and R&B – 37.7% of songs mentioned alcohol), followed by country (21.8%) and pop (14.9%).

• Alcohol use was portrayed as overwhelmingly positive, with negative consequences rarely mentioned.

In the study's press release, researchers highlight several practice implications of these findings:

• “Given the heavy exposure of youth to popular music, these results suggest popular music may serve as a major source of promotion of alcohol use among youth,” said study co-author David Jernigan, PhD. “The findings lay a strong foundation for further research.”

• “A small number of alcohol brands and beverages appear to make frequent appearances in popular music,” said Michael Siegel, MD, MPH, professor of Community Health Sciences at the Boston University School of Public Health. “If these exposures are found to influence youth drinking behavior, then further public health efforts must be focused on youth exposure to alcohol portrayals in popular music.”

What Can “Chronic Resilience” Teach Public Health Practitioners? An Interview With Author Danea Horn

Last month I had the pleasure of receiving an advanced review copy of "Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness".  As I read through the book, I made note of many issues that are relevant to public health practitioners.  Therefore, it is a pleasure to have Danea Horn expand her comments on these topics for Pop Health readers. 

If you would like to connect with Danea, you can visit her website or twitter.

Leah:  In public health, we talk a lot about how our society’s “culture” can promote or harm health.  In several places in your book, you talk about the connection between our societal values and our health.  For example:

Page 33: “Part of the reason we try to be all things to all people is our culture.  Have you ever sat through a business meeting while someone is sniffling and sneezing and exposing everyone else to their cold?  In that moment they are valuing achievement, money, or appearances above their health and the health of everyone else in the room.”

How can we expand your strategies beyond the individual level?  How can we identify and live our health values at the neighborhood, community, and organization levels?

Danea:  It only takes one person to start a conversation that can become the catalyst for big changes. Start talking to people at your work and in your community to get a feel for what is valued currently. The policies (written and unwritten) in our offices and items at our potlucks will say a lot about what we collectively value. If you find inconsistency or confusion in your conversations, open up a dialogue with the leaders in your organization or community to discuss what you would like to collectively choose to value. From here you can brainstorm together ways to influence change. They can be small changes like creating a healthy living block party where people share nourishing dishes and swap good-for-you recipes or larger changes like paid sick leave (which is not mandatory in every state…yet). Never be afraid to speak up. A big theme in Chronic Resilience is controlling what you can control and talking is in your control. 

Leah:  In Chapter #6, you write “It is up to you to decide how public to make your health.”  You and several of the women you interviewed for your book have blogs that document your health journey in a very public way.  Public health researchers Ressler et al (2012) have identified many benefits of patient blogging (e.g., patients report a decrease in feelings of isolation).

What benefits have you experienced as a result of writing about your health?  What challenges have you encountered during the process of sharing your story publicly?

Danea:  Writing helps me process what is going on from a different perspective. I am all about learning from our challenges, so each post I write is a search for a lesson or message that my diagnosis is pointing me toward. I can feel frustrated about the progression of my disease and start out writing a rant, but I find that I naturally end up with a message about letting go of my ideals or acceptance. Reframing my health in this way has been very empowering.

I haven’t encountered many challenges by being public with my health journey. Commenters have been very supportive. That said, I am discerning about what I choose to share and do keep some things private. Challenges I know other people have faced, and someone who blogs publicly about their health should be prepared for, are people sharing remedies, treatment recommendations, cure-all solutions and pleas to have faith in a deity they may or may not believe in. While these all come from a caring place they may feel intrusive. Also, you may want to give a heads-up to your close family and friends before you post anything particularly revealing, emotionally or otherwise, that you haven’t shared with them in private first.

There are a number of ways to benefit from writing about your health. Doing it publicly on a blog can create a sense of support and community, but if that feels too invasive, you can join support forums anonymously, create a private blog or journal pen and paper old school style.

Leah:  In Chapter #7 (“Empower Yourself With Research”), I was thrilled to see your emphasis on helping patients evaluate the validity and safety of medical information found on the Internet.  This is a huge challenge in public health!  Our evidence-based messages and guidelines often compete online with anecdotal evidence and unscientific studies.

Why did you decide to dedicate a portion of your book to this discussion?  Why is it so important for patients to discuss what they find online with their medical team?

Danea:  Before I became discerning about what I read online about my diagnosis, I was completely stressed. I read way too much from too many random sources to properly sort out what I should believe. I also noticed that I was searching for how I was going to become sicker (the side effects, complications, and progression of my illness) instead of searching for how I could support my heath. Fortunately, I realized most of my stress was coming from worry created by endless Internet searching, and I decided to take a different approach.

I found a few sources from trusted physicians and nutritionists to study and implement. I decided to stay focused on my personal symptoms, medications and prognosis instead of what other people I didn't even personally know had experienced. I also started a more open dialogue with my doctors about the diet I wanted to try and some of the studies I had read. When we research and experiment with our health without informing our doctors, we may have conflicting approaches which can create drug interactions or other harmful complications. Doctors are there to support us. If you are uncomfortable talking with yours, it’s time to find one that you trust enough to be completely open and honest with. We should all have a doctor who will work with us to find treatment solutions we feel comfortable with.

Leah:  A big thank-you to Danea for making the time for Pop Health!  "Chronic Resilience" is a great read for those with a personal and/or professional connection to chronic illness.  For public health clinicians, practitioners, and researchers who work in the chronic illness arena:  I think you will get a unique first-hand view into (1) the mental, physical, and emotional challenges that affect this population, (2) the incredible resilience that those with chronic illness show on a day-to-day basis (what can we learn from them??), and (3) specific strategies that can be employed to support patients with chronic illness.  As Danea and I discuss above, these strategies have the potential to be expanded from the individual level to offer support to entire communities.

Is Refined Carbohydrate Addictive?

[Note: in previous versions, I mixed up "LGI" and "HGI" terms in a couple of spots.  These are now corrected.  Thanks to readers for pointing them out.]

Recently, a new study was published that triggered an avalanche of media reports suggesting that refined carbohydrate may be addictive:

Refined Carbs May Trigger Food Addiction
Refined Carbs May Trigger Food Addictions
Can You be Addicted to Carbs?
etc.

This makes for attention-grabbing headlines, but in fact the study had virtually nothing to do with food addiction.  The study made no attempt to measure addictive behavior related to refined carbohydrate or any other food, nor did it aim to do so.

So what did the study actually find, why is it being extrapolated to food addiction, and is this a reasonable extrapolation?  Answering these questions dredges up a number of interesting scientific points, some of which undermine popular notions of what determines eating behavior.

Read more »