A study published February 8 in the journal Social Science & Medicine reviewed 200 GoFundMe campaigns for health care expenses from 2016, finding that 90 percent of them did not reach their financial goal, netting just 40 percent of their goal on average. About 10 percent of campaigns in the study raised less than $100.
Researchers also found that crowdfunding usage reflects inequities in access to health care across the United States. Campaigns to pay for health care costs were more likely to come from states that rejected Medicaid expansion under the Affordable Care Act. While 39 percent of the U.S. population lives in those states, 54 percent of the randomly sampled campaigns came from them.
The study found that crowdfunding platforms give an advantage to users with skills in self-marketing, social media and video production. People with the most complicated and least-hopeful medical problems tend to have the hardest time raising funds.In short, the researchers say, the rise of medical crowdfunding reflects — and potentially worsens — inequities already at play in the United States.
"We found that a good campaign has to do with solvable problems and so-called good investments," said co-author Nora Kenworthy, assistant professor of nursing and health studies at the University of Washington, Bothell. "Those are not the same values that an equitable health system is based on. These sites are being asked to fill in the gaps in system, but they're only filling gaps for people who have solvable needs." The study is one of the first in-depth examinations of the rise of crowdfunding for medical costs on sites like YouCaring, GiveForward, and Fundly. GoFundMe, the largest such site, has hosted more than 2 million campaigns for medical costs.
Digital platforms can present barriers for many groups of people — the elderly, those with lower education levels, and those in poverty — who bear a disproportionate burden of chronic health conditions and tend to carry more medical debt. Very few campaigns go viral beyond one's personal network, which penalizes those who don't have wealthy connections. It's easier to fundraise for a single need, the researchers say, rather than a tangle of medical costs, housing payments, utility bills and car repairs —exactly the kinds of needs that pile up for those living in poverty.
The researchers examined public health impacts as well as the privacy concerns and emotional demands of forcing people to go online to ask for help for medical bills. They also studied the rhetoric people use to demonstrate their deservingness.
"People say 'I wish I didn't have to do this. I'm so embarrassed,'" said co-author Lauren Berliner, assistant professor in UW Bothell's School of Interdisciplinary Arts & Sciences. "They use disclaimers: 'I wouldn't do this unless I had nowhere else to turn.'"
The study, funded with support from the UW Simpson Center for the Humanities, found that it was not necessarily the most tragic stories that drew the most support, but the ones that presented a solvable need and most successfully employed memes, hashtags, images and other timely social media skills. While online fundraising experts strongly recommend using video, only 3 percent of the studied campaigns did so, suggesting a technical barrier for users.
A for-profit company, GoFundMe charges a 7.9 percent fee on donations. Using crowdfunding can also jeopardize those receiving public benefits based on income, like Medicaid, since any funds raised can qualify as income.
In future research, Berliner and Kenworthy will further study the privacy risks of disclosing personal health information online. They have already found examples of users posting their medical bills to GoFundMe, which is entirely public. Others posted extensive photographs to show the need for dental work and facial reconstruction surgery.
"A campaign's success can depend on how much it divulges of a person's health history, financial situation, and even genetic makeup, information that will live online long after the fundraising ends," they write.
The authors also plan to conduct ethnographic interviews with GoFundMe users, as well as crowdfunding industry insiders and medical financing professionals who advise patients to use such sites. Kenworthy is also researching crowdfunding platforms focused on global health.
The most dangerous consequence of the rise of medical crowdfunding, the authors argue, is the way it trains us to see health care as a personal good to be earned, rather than a universal human right.
In the U.S., 62 percent of bankruptcies are tied to medical expenses, according to a 2012 American Journal of Medicine study. Other forums, like a public town hall, could provide room for debate on whether we want this state of affairs in our country. The format of GoFundMe steers users toward “hyper-individualized accounts of suffering.”
“Relying on these sites changes how we perceive the problem,” said Kenworthy. “It masks a more open conversation we could be having about the inequities of our health system. There’s no space for a structural critique in your personal appeal.”
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For more information, contact Berliner at 619-301-5935 or [email protected]; or Kenworthy at 425-352-3621 or [email protected].
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