by Macey L. Henderson, J.D.
It takes more than a TV news story or a Twitter hashtag campaign to save lives. Last August’s viral ice bucket challenge did more than just improve public health awareness of an issue. Its now been reported to have made a real impact into research for a rare disease, not just for improved public education and awareness.
An estimated 5,000 persons receive a diagnosis of Amyotrophic Lateral Sclerosis (ALS) each year in the United States, with an estimated prevalence of 12,000 cases according to the Centers for Disease Control and Prevention (CDC). The prevalence rate of ALS in the U.S. is consistent with previously reported prevalence rates from ALS registries in Europe.
A year ago, Forbes reported that the ice bucket challenge had raised more than $100 million dollars. Now one year later, CBS News reported that after 17 million people rose to the challenge, including President Barack Obama, more than $220 million has been raised for medical research and treatment for ALS. In contrast, the National Institutes of Health is projected to spend $50 million on ALS research in FY 2016, which is a $2 million increase from $48 million in FY 2014 and FY 2015.
Philip Wong, a professor at Johns Hopkins who led the research team responsible for decoding the protein TDP-43, credited the ice bucket challenge with facilitating, in part, this groundbreaking research. Should future research on mice models prove successful, human clinical trials could be the next step. Should clinical trials be in the foreseeable future, they already have a funding source should they receive proper ethical and regulatory oversight and approval. Not many researchers can say that.
Although the research team has been studying ALS for over a decade, researcher Jonathan Ling, said in an “Ask Me Anything” thread on Reddit, that the millions of dollars brought into the field from the viral ice bucket challenge has given researchers the financial stability to pursue “high risk, high reward” experiments. Any researcher knows that financial stability is not easy to come by in today’s fiercely competitive and fiscally constrained research. When I began my PhD program in health policy and management in 2012, my mentors told me you had to submit 10 research grant proposals to get one successfully funded, which was up 50% from when they were doctoral students. Now in 2015, young scientists are facing the worst funding environment in 50 years according to NIH Director Dr. Francis Collins.
Should we keep turning to social media to increase and to stabilize the flow of research cash funding? Are there justifiable reasons why we would not do such?
There are ethical or policy reasons why we may not consider turning to social media for sustainability in research funding. Consider orphan diseases for which the FDA funded $19 million through 15 research grants in 2014. What about research funding for other diseases? When money goes to one disease that means it does not go to others. The increased philanthropy towards ALS and other rare diseases could have other implications for population health. Consider Alzheimer’s disease for which the CDC estimates to be the 6th leading cause of death in America with about 27 deaths per 100,000. Is it just for research dollars to favor ALS over a disease that affects more people?
The ALS Foundation continues to use social media to support their efforts to ‘transform a moment into a movement’ with their #EveryAugustUntilACure campaign. As social media advocacy will continue to play a prominent role in our lives, we need to pay close attention to the results of the efforts and continue to evaluate them.
Could hashtag activism really just lead to social media slacktivism? In the case of social media slacktivism, online participants might confuse their tweets, likes, posts, or shares with the power and ability to impact the cause with real change. Hashtag activism might just become diluted within our digital worlds, much like traditional paper flyers frequently get tossed, unopened, or recycled. As the ice-bucket challenge provided a way to turn awareness into action by providing easy and sharable mechanisms for financial donations, in most cases we need time to tell whether social media trend analytics showing increases in public awareness actually reflect real-life impact.
As a recent example, IndyCar driver Justin Wilson was tragically killed in a freak accident on the race track. Justin suffered a catastrophic head injury and had pre-chosen to donate his organs. Justin’s brother and fellow racer Stefan was the first to announce on Twitter that his death saved the lives of 6 others. Soon thereafter, a local CBS affiliate ran a story on the 6pm evening news highlighting an increase in attention to the Indiana Donor Network after the death of the IndyCar driver whose donation was covered by ESPN, among many other primetime media outlets. The local news coverage reported that Indiana Donor Network social media accounts had seen increased engagements as well as increased traffic to their website in the days following Justin’s donation. While 70% of Hoosiers are currently registered organ donors, how can we tell if and how much Justin Wilson’s story moves the needle to 100%?
In addition to time, analysis beyond the immediate scope of engagement analytics will be necessary to evaluate impacts associated with social media activism. As social media allows for everyone to be an advocate, and in the case of the ice-bucket challenge, paid off with real cash for rare disease research efforts, we need to be mindful of its limitations as well as its potential population health (i.e. research agenda-setting) impacts.