Wednesday, August 13, 2014

Can The #IceBucketChallenge Really Help Cure ALS?

Picture via

*Thank you to Erica Banz, Tim Reinhardt, Christina Reinhardt, Dorothy Sutton, Lauren Sierotowicz, & Kellie Anderson for sharing your insights as Ice Bucket Challenge participants and supporters.

Public health professionals are naturally skeptical. We see tons of health programs and initiatives launched every day. If they lack a logic model, a strategic plan, and strong evidence to show that their activities lead to specific, measurable outcomes, we hesitate to support them. Acknowledging my skepticism, I felt it was important to integrate the perspective of ice bucket challenge participants into this post.

The #IceBucketChallenge (IBC) that has gone viral on social media in recent weeks is focused on Amyotrophic lateral sclerosis (ALS). This disease affects the nervous system, causes muscle weakness and impacts physical function. It is a devastating disease.

What Makes Something Go Viral (or not)? 
We public health folks are always trying to figure out what communication strategies will capture attention, be clear/understandable/sustainable, and easy to share on social media. So what I find fascinating is that this same challenge strategy was making the rounds on social media long before it became linked with ALS...but few of us had heard of it. For example, in June college basketball programs started the #chillin4charity cold water challenge to benefit the Kay Yow Fund. The change came (according to Elle Magazine), when Pete Frates took the IBC on July 31st. From then on, the challenge was forever linked with ALS and it caught on like wildfire. Why was the same challenge, same strategy so much more popular for the ALS initiative? Timing? Visible champions for the cause? Marketing?

I asked my friends about their motivations for participating and their thoughts on what made the challenge so popular. Several had a personal connection to the cause of ALS, so were already engaged. However, almost everyone mentioned that the challenge was funny, driven by the nomination/“nudge”/peer pressure factor, and encouraged community building. Tim compared it to a 5K race. “Inherently, running 3.1 miles has nothing to do with solving a problem or curing a disease, but it is a fun activity to do with other people and it results in money being raised and awareness being raised.”

Is The Ice Bucket Challenge Effective? 
Along with the glowing articles of support and famous participants, there have been several articles that have strongly criticized the challenge. The concerns are primarily that the challenge’s origins/rules are vague, participants do not always know what they are supporting, and accepting the challenge does not necessarily translate into donations or increased resources for ALS.

For me, there are a few key questions to be answered before we can talk effectiveness:

#1 What are the goals of the ice bucket challenge?
Clear goals are the only way to evaluate the success of the program. I’ve heard the goal is to “raise awareness” and if you are a regular Pop Health reader, you know this makes me cringe a little. In my opinion, “raising awareness” is one of the most poorly defined concepts in public health. If you talk to 10 people, you get 10 different answers about what it means. Usually people say it means one or more of the following:

  • Knowing that a disease exists (symptoms, causes, treatments, etc.)
  • Getting people to talk about the disease with others
  • Getting people screened for the disease
  • Getting people to donate money for the disease (for treatment, research, etc.)

As you can imagine, with a wide variety of definitions, “raising awareness” can be very hard to measure. Each of the goals above would be measured and evaluated in a completely different way.

#2 Are participants sticking to the rules of the challenge?
From my research, the rules of the IBC are:

  • You receive the challenge from someone else and have 24 hours to accept
  • Accepting includes filling a bucket with ice and cold water, dumping it over your head, calling out the cause you're supporting and challenging friends to continue the message, and of course, posting video proof to social media
  • Declining includes donating $100 to an ALS association of your choice (or whatever charity has been named)

In preparation for this post, I watched a bunch of friends’ videos. While all very funny, I can certainly say I have some concerns about program fidelity (i.e., how closely a program was implemented as intended). Kellie voiced the same concerns, “I think the donation piece of it has gotten lost through the various iterations.” If the challenge morphs over time (like a game of “telephone”), it can be very difficult to evaluate. In other words, if goals are not achieved, is that because the challenge is just a bad idea? Or is it because half the required elements were missing from participants’ videos?

#3 What outcomes are being measured?
While there have been some negative reactions to the challenge, there is no denying that donations are up. It may be hard to evaluate the true scope of donation increases because people are donating to many different ALS charities. Hopefully these charities are communicating and finding a way to aggregate and report on their donations post-IBC as a whole. My colleague Christine Keeves points out that only time will tell if participants evolve from one-time donors to long-term engaged donors/activists.

In the Elle article, Pete’s wife Julie says that the goal for the challenge is to help people understand what ALS is. “...even if they just see the ice bucket challenge and Google, 'What is ALS?' that’s a success, because that’s really all we can ask for." I certainly hope someone is evaluating this because it is easily measurable! Other studies of similar activities (e.g., autism awareness month) have shown a boost in Google searches.

It is unclear what is next for the challenge. Christina wonders “how and when it will fade out, and whether people will continue to donate down the line.”

I want to hear from Pop Health readers (both IBC accepters and decliners):

  • Why did you accept or decline the challenge?
  • What do you think made the challenge go viral for ALS specifically?
  • Will the challenge be successful? Why or why not?
  • If you were the program evaluator, what other kinds of outcomes would you want to measure?

Thursday, August 7, 2014

Olivia Wilde, World Breastfeeding Week, Infant Formula, and A Critique of the Language We Use to Talk About It

My son taking a bottle of formula in the NICU (February 2014)
When my baby boy arrived, he weighed 4 pounds, 13 ounces. He entered the world 8 weeks early and spent 29 days in the Neonatal Intensive Care Unit (NICU). When your baby is in the NICU, there is enormous pressure to breastfeed. The nurses rolled a hospital grade pump to my bed side just hours after delivery and minutes after my first visit to my baby’s incubator in the NICU. “Breast milk is like medicine for preemies”, I was told. Every day I pumped around the clock and delivered milk to the NICU in the insulated bags they provided…like I was packing his lunch for school. Every milliliter was carefully inventoried and measured by the NICU nurses. I always knew from the looks on their faces if I had made enough to feed him for the day. Like I said- enormous pressure. Things were going okay until about 10 days after delivery. I developed mastitis on the right breast. For those unfamiliar, mastitis is an infection of the breast tissue. I had pain, high fever, and chills. After two antibiotics it resolved. Then I developed a second mastitis infection on the other side. The pain was excruciating. The infections did a number on my body, my sleep, and my milk production (and yes we worked with lactation consultants and did all sorts of tricks to try and increase production). My husband and I made the decision to switch my son to formula at 3 weeks old. We did it for his health, my health, and my ability to care for him when he was discharged. I can easily say it was the best decision we could have made. My sweet boy absolutely thrived on his special preemie formula. He tolerated it very well, grew, and got stronger. We are incredibly grateful for formula. To us, it is an amazing public health innovation. It feeds our baby when I cannot.

So it is through the lens of both a (proud) formula feeding mom and public health practitioner, that I examine the current public health campaigns focused on birth and infant feeding. A recurring theme for me is concern about the language being used in these campaigns. Somehow public health has not found an effective way to promote breastfeeding without stigmatizing formula feeding.

For example:

  • All birthing hospitals in Philadelphia have officially discontinued the practice of giving free formula to new mothers. While I understand that this strategy is supported by evidence, it is part of a larger international initiative to make hospitals “Baby Friendly”. So using that logic, providing formula is “unfriendly” to babies? This message was reinforced by Nurse McGinn who was interviewed for the story. She reports that she “was given free formula and threw it out”. Quotes like these reinforce the message that feeding with formula is equivalent to giving your kid poison. 
  • A friend sent me a link to a wonderful story about supporting formula feeding moms during World Breastfeeding Week. This article does a great job of examining the language being used in this campaign. The terms connect breastfeeding with “winning” and achieving “goals”. So the flip side is “losing” and “falling short of your goals”? This can be a rough reminder for formula feeding moms. For many women, the switch to formula was made after extreme pain, guilt, and feelings of failure. 

Recommendation: When thinking about health communication, I’m a big fan of testing out campaign terms, along with their antonyms. This can help you to anticipate unintended consequences of your messages.

For example, a public health colleague tweeted that we should use the language “breastfeeding is normal” instead of “breast is best”. Although it was not her intention, I read that as meaning that anything other than breastfeeding is abnormal. So formula feeding is abnormal?! Not a great message to send to women.

However, this kind of message is often communicated. In the Olivia Wilde photo spread for Glamour Magazine which includes a photo of her feeding her son, she says “Breastfeeding is the most natural thing…” I guess it is, unless it did not work for you and your baby. Then it feels pretty unnatural.

So I ask readers

(1) While these breastfeeding and baby friendly campaigns have well-intentioned public health goals (which I support):

  • What are the unintended consequences of their language and communication choices? 
  • Do they help reinforce the divide between formula feeding and breastfeeding mothers?
  • What about the women who both formula and breastfeed? Where do they fit in?

(2) What are your suggestions for more effective language? How can we simultaneously promote breastfeeding without stigmatizing formula feeding?

Sunday, July 13, 2014

In Honor of The World Cup: My Favorite Public Health Themed "Things Tim Howard Could Save"

As the World Cup came to a close this afternoon, I had fun revisiting my favorite #ThingsTimHowardCouldSave. For those of you that missed this fun Twitter hashtag: Back on July 1st, the United States Men's National Soccer Team played Belgium in the World Cup. Although the US lost the match, its goal keeper Tim Howard was amazing with 16 saves. His performance inspired an outpouring of memes that speculated on things that Tim Howard could save around the world. 

Since I am fascinated by strategies for using popular culture to engage people in public health, I was happy to see my colleagues join in and use Tim Howard to draw attention to:

(1) Substance Abuse

(2) Global Vaccines & Immunization

(3) Infectious Diseases and Various Disasters 

This isn't the first time that I've written about public health agencies aligning with a trending topic in order to engage a new or broader audience. What do you think?
  • Is this an effective way to engage a larger audience?
  • How should public health agencies evaluate such efforts? What metrics are important?
  • Should agencies dedicate staff (on an ongoing basis) to monitoring such popular culture trends in order to develop timely social media content? Why or why not?
  • Please share other examples of Tim Howard/Public Health tweets that I may have missed!

Monday, June 23, 2014

The Value of Social Media for Public Health Professionals- A New Article!

My regular readers know that I am a huge fan of social media. I think it has so much to offer the field of public health. I have regularly posted about how platforms like Twitter, Facebook, Instagram, and Pinterest can be used to support public health activities like emergency response and health advocacy.

In addition to its benefit to the field, I believe social media also benefits the individual public health practitioners who use it. I have recently written an article for the journal Health Promotion Practice which outlines the value of social media for public health career development. I hope you will check it out, share with colleagues, and keep the discussion going!

Monday, June 9, 2014

Apparently the Miss USA Pageant Rewards Victim Blaming

During last night’s Miss USA pageant, the top six contestants were each asked a different question about an important cultural or political issue.

For Miss Nevada, Nia Sanchez, Judge Rumer Willis asked a question about sexual assault on college campuses. She asked why Nia thought such crimes have been "swept under the rug for so long" and what colleges can do to combat that. Here is the response from Sanchez:

"I believe that some colleges may potentially be afraid of having a bad reputation and that would be a reason it could be swept under the rug, because they don't want that to come out into the public. But I think more awareness is very important so women can learn how to protect themselves. Myself, as a fourth-degree black belt, I learned from a young age that you need to be confident and be able to defend yourself. And I think that's something that we should start to really implement for a lot of women."

The reason this response is so cringe worthy is that it completely puts the responsibility on women to prevent rape. In other words: If women are confident, learn self-defense, and fight back- rape will be prevented. On the flip side: If they DON’T fight back, somehow it is their fault that the assault occurred. This is a terrible message and one that goes against everything we know about effective prevention.

Last month I wrote about the White House’s new report “Not Alone” and PSA which focuses on protecting students from sexual assault. They both highlight important strategies for preventing assaults which include:

  • Identifying evidence-based strategies for preventing sexual violence
  • Developing and evaluating new prevention strategies
  • Getting everyone to step in (also known as bystander interventions). Everyone is asked to speak out against rape myths and intervene if someone is at risk of being assaulted.
  • Enlisting men as allies

Effective strategies focus on making change at the system-level. They focus on changing a culture (campus or beyond) that accepts sexual violence. They fight against rape myths that include: “she was assaulted because she didn’t fight back”. Unfortunately, the Miss USA pageant provided a huge stage (literally and figuratively) for that myth to be perpetuated. And Nia Sanchez was greatly rewarded for promoting this victim blaming myth- she was crowned Miss USA.

Monday, June 2, 2014

"Return to Zero"- A Movie Review

Having recently gone through a pregnancy, I debated about watching “Return to Zero”. My little boy was born in January 2014. He was 8 weeks premature and spent a month in the Neonatal Intensive Care Unit. While he is happy and healthy now, there were some scary moments before and after his arrival. I was worried that the movie would be a little too stressful, too soon. But I am incredibly glad that I decided to watch. It premiered on Lifetime TV on May 17, 2014.

The movie begins with Maggie and Aaron Royal in the home stretch of their first pregnancy. Then a few weeks before their due date, they find out that their baby boy is stillborn. A stillbirth is a fetal death occurring after 20 weeks of pregnancy. I assume most viewers were like me- crying along with the Royals as they had to make quick decisions about how the baby would be delivered, if they would like to take pictures, and if the baby would be buried or cremated. The movie then follows the Royals in the months that follow as they grieve, try to hold onto their marriage, re-enter the work force, and (unexpectedly) begin a second pregnancy.

While the movie focuses on an individual family (based on the true story lived by the director Sean Hanish), there are many public health implications we should be talking about:

  • Public Knowledge and Language: Several times in the film Maggie makes the distinction that a stillbirth is not the same as a miscarriage. Does the public know the difference? From Maggie’s reaction, it is clear that the comparison can be quite offensive to the parents of stillborn children. These deaths happen much later when the babies are often viable. They are (in many cases) full-term. The mothers have felt the babies moving and are visibly “showing” in their pregnancy. They do not have the option of dealing with their loss privately.
    • However, I will note that many who have suffered a miscarriage will relate to the emotions that Maggie and Aaron experience. In revealing her own miscarriage Maggie’s mother tells her, “It’s still a loss Maggie. And it still hurts. It’s not just the loss of a baby, it’s the loss of a possibility of what might have been- and that is exactly the same.” Perhaps there is a way for the stillbirth and miscarriage communities to support each other while still making this important distinction in language and definition?
  • Stigma: Wow! Did I cringe watching some of Maggie’s friends and family members interact with her after the loss of her baby! Some people just walked away to avoid her, others pushed their religious views on her (“this was God’s will, etc). She made people uncomfortable because they did not know what to say or how to help her. This is fascinating considering the prevalence statistics on stillbirth (various sources showing it occurs between 1 in 160 and 1 in 200 pregnancies)- it is not that uncommon! I think that the movie does a great job of pointing this out. This happens to people. We need to learn how to talk about it and support our friends and family.
  • Training for Providers: After learning their son has died, Maggie and Aaron have a conversation with their doctor and a social worker about their plans for their son. They are clearly in shock. As the social worker asks if they have thought about burial or cremation for their son, Aaron asks in frustration and disbelief, “Should we have thought about it?” How do medical, nursing, and social work programs/training prepare providers to have this conversation? Do providers know how to have it in a way that respects the family without further traumatizing them (or the providers themselves)?
  • Support for Providers: In probably the most incredible scene of the movie, we see Maggie deliver her stillborn son. And one thing I kept thinking was- what kind of support is in place to help the medical providers in this situation? Maggie and Aaron had a labor and delivery nurse and doctor with them- how much does this weigh on those providers? They deal with not just stillbirth, but other difficult situations (preterm births, maternal complications, etc.)- I hope that they are given coping skills and the option of speaking with a social worker or other support at the hospital if needed. I would imagine that dealing with this type of case would be incredibly mentally and physically taxing for a provider.

While the subject matter is incredibly difficult, the film is exquisite. Minnie Driver is amazing. And although you are grieving with the characters, you also leave hopeful.

What did others think? Leave me a comment- I would love to hear your thoughts!

Thursday, May 8, 2014

1 is 2 Many: Can a Celebrity PSA Help Men to Stop Sexual Assault?

Last week The White House released, “Not Alone”, the first report of a task force on protecting students from sexual assault. To accompany the report, they also produced a public service announcement featuring several well-known celebrity men: Dule Hill, Benicio Del Toro, Seth Meyers, Daniel Craig, and Steve Carell.  Vice President Biden and President Obama appear in the PSA as well.

There were a lot of good things about the video.  In 60 seconds, it answered these key questions:

  • What is the problem? Sexual assault.
  • Where is it happening? Everywhere- on college campuses, at bars, at parties, even in high schools.
  • Who are the victims/survivors? Our sisters, our daughters, our wives, our friends.
  • Where can I find more information? 
  • How can I help? Intervene.

The PSA encouraged viewers to intervene if they find themselves as a bystander. This is important because bystander interventions are promising, evidence-based strategies for preventing sexual assault.
The celebrities outline several key actions that bystanders can take to help the victims/survivors and combat stigma of sexual assault:

  • VP Biden: “If I saw it happening, I was taught you have to do something about it”.
  • Benicio Del Toro: “If I saw it happening, I speak up”.
  • Daniel Craig: “If I saw it happening, I’d never blame her, I’d help her”.

While I liked the PSA for all the reasons above…there were also a few things I found interesting and would have loved to be a fly on the wall during the video development:

  • Celebrity selection: They did a nice job recruiting some diversity in terms of the men’s racial/ethnic backgrounds and their fans/audiences. Meyers and Carell are primarily comedians, Del Toro and Craig have starred in more drama/action movies, and Hill has done both (I’m a huge fan of his from both “West Wing” and “Psych”). The PSA did not list their names to identify them, so I did wonder- “Would every viewer recognize all these actors?- How does that affect the video’s impact?” I also wondered about Del Toro and Craig’s inclusion because they have starred in some incredibly violent movies (e.g., “Traffic” and the James Bond series, respectively). Of course this doesn’t mean they are violent in real life, but how do these movies contribute to violence being accepted in our society?
  • The audience: While we can assume that the intended PSA audience is men (based on language in the “Not Alone” report, their recruiting of all male speakers and their description of victims/survivors- “our sisters, our daughters, etc.”), they never actually say they are speaking to men. They say things like, “we have to stop it”; “we need your help”. Since the intervention strategies can be applicable to anyone regardless of gender, I wonder if they purposely did not use the word “men” to engage a broader audience? 
  • Male victims/survivors: Although the website and report note that men comprise a small number of victims and are no less important, they do not make an appearance in the PSA. This huge national initiative has an opportunity to be inclusive and I worry this exclusion could further stigmatize male victims.

What do you think?

  • Do you think the celebrity PSA can help stop sexual assault? Why or why not?
  • Do you think the video producers clearly defined and spoke to their audience? Why or why not?
  • If you read the “Not Alone” report: what do you think about the initial action steps (e.g., launching a sexual assault climate survey for campuses)? Will these steps lead to effective prevention and response?