Can The #IceBucketChallenge Really Help Cure ALS?

Picture via Today.com

*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?