But new research from the 91̽��, believed to be one of the first large-scale assessments of medical crowdfunding in the U.S., shows that people in states with higher medical debt and lower rates of insurance coverage are more likely to try to raise money but less likely to succeed.

This so-called safety net, researchers point out, isn’t much of one at all.

“We tend to think of crowdfunding as something that can help out anyone in hard times, but this data really indicates that where people need the most help paying for health care, crowdfunding provides the least help,” said , associate professor of nursing and health studies at 91̽��Bothell.

The , published Feb. 3 in the American Journal of Public Health, collected data from more than 437,000 GoFundMe campaigns over a five-year period and analyzed, at the county and state level, crowdfunding use and outcomes. With the help of Census data and other information, Kenworthy and 91̽��co-author , a graduate student in sociology, assessed how many campaigns were started, and how much money was raised, in areas with more or less income, medical debt and health insurance coverage.

The 91̽��researchers have explored various angles of crowdfunding – who uses it, where they live and how successful their campaigns are. Last year, Igra and Kenworthy focused on crowdfunding during the first several months of the COVID-19 pandemic and found that  campaigns were more successful in wealthier and more educated communities, a trend they attributed not just to financial resources available in such communities, but also to potentially wider – and wealthier – social networks. Igra and Kenworthy also found that 90% of campaigns, regardless of location, failed to meet their goals.

In examining 2020 data — the last full year available — researchers said one statistic stood out: 33.8% of campaigns were unfunded. The percentage varied so much from that of previous years, when the portion ranged from zero to 4%, that researchers believe the pandemic alone wasn’t the cause. Rather, it appears more successful campaigns remain on the website longer, and thus previous years’ data may over-represent successful campaigns. In addition, unfunded campaigns appear to be removed from the site, either by the campaign creators or the website moderators, after one year, the researchers said.

“Because the campaigns people see on social networks are almost always the small subset that are shared widely, the public may have the impression that crowdfunding is more likely to be successful than it really is,” Igra said.

Greater transparency from all crowdfunding companies would allow more research and policymaking that could help address the very needs that crowdfunding purports to address, the researchers say. While thousands of people turn to crowdfunding to pay their medical bills, the study’s findings point to a more equitable and comprehensive solution: better health insurance coverage and social assistance programs.

“Relying on marketplace-based solutions only deepens already steep health inequalities. This research underscores the need for broader safety net programs that provide help to all those who need it,” Kenworthy said.

This study was funded by the National Science Foundation and the National Institute of Child Health and Human Development, through the 91̽��Center for Studies in Demography & Ecology.

For more information, contact Igra at igra@uw.edu or Kenworthy at njk8@uw.edu.

During the first several months of the pandemic — when communities locked down, jobs were lost, PPE was scarce and store shelves were cleared — thousands of people turned to online crowdfunding to meet their needs.

But a new 91̽�� analysis of requests and donations to the popular crowdfunding site GoFundMe, along with Census data, shows stark inequities in where the money went and how much was donated.

A published June 15 in Social Science & Medicine found more than 175,000 COVID-19-related GoFundMe campaigns in the U.S., raising more than $416 million, from January through July 2020. Researchers found that affluent and educated communities created more fundraising campaigns, and received more in return, than other communities with fewer resources.

What’s more, researchers found that campaign success, overall, was hard to come by. Some 43% of campaigns didn’t receive a single donation. More than 90% of campaigns didn’t meet their goals.

Researchers say the study reveals the challenges inherent to online crowdfunding, as well as its capacity to reinforce existing socioeconomic divides.

“Our study shows that even though COVID-19 had an impact across the country, the places that benefitted most from crowdfunding were the places that already had the most resources available,” said the study’s lead author, , a graduate student in sociology at the UW.

While some results may not be surprising from an economic standpoint — people in wealthier communities likely have more money to donate to charitable causes — researchers say the results highlight other factors contributing to campaign success. For example, people in more educated communities are likely better able to tap into existing social networks to raise money — whereas in communities where education is lower the needs may be greater, but residents may have fewer connections to affluent donors, and fewer campaigns reach their goals.

Other recent research has explored finding that campaigns are common, but often unsuccessful, in communities where health care resources and insurance coverage are lacking. This study is believed to be the first to examine online crowdfunding as a broader crisis response, and its impacts on inequality.

In examining COVID-19-related fundraising campaigns that mentioned a need associated with the pandemic, such as a lost job and a need for food or rent money, researchers eliminated those that were part of a GoFundMe program providing matching funds for businesses, leaving about 164,000 campaigns to sort through. Because demographic data about crowdfunding users is hard to come by, researchers analyzed campaign data at a county level and compared it with other county-level socioeconomic characteristics using U.S. Census data. Among their findings:

• The median campaign goal was $5,000, with a median of two donations and only $65 raised.
• The top 1% of campaigns received nearly one-quarter of all the money raised.
• As COVID-19 cases and unemployment rose in a variety of communities, more fundraising campaigns were created in communities with higher education and income levels.
• Counties where 35% of residents are college graduates can expect about 50% more campaigns than counties where only 12% are graduates.
• Counties with a median household income of at least $130,000 raised nearly $150 million, almost three times as much as counties with a median income of $19,000 to $47,000, even though the populations of those counties are about the same.
• A keyword search of GoFundMe campaign requests found that those identifying business and medical needs yielded more donations than those campaigns that mentioned personal financial needs.

GoFundMe’s approach of highlighting and promoting certain campaigns, whether those tied to a high-profile person or those that are gaining attention and growing at a faster rate, means success begets success, researchers said.

Co-author , an associate professor of nursing and health studies at 91̽��Bothell, said the study shows who’s able to leverage resources in a crisis, and that the nature of online crowdfunding as a social media platform exacerbates the dynamics of a crisis.

“During the pandemic, there’s been a lot of talk of communities supporting communities, but we need to ask, where does that happen, for whom, and who gets left out?” said Kenworthy. “The more we rely on social media platforms to shape that community response, the more we are blinded to where help is not happening and who’s not getting assistance.”

That’s not to say crowdfunding doesn’t serve a valuable purpose, the authors point out. It’s more a sign “that we shouldn’t shy away from more structural solutions,” Kenworthy said, such as government-run programs that could cast a wider net than crowdfunding can cover.

“People’s fundamental needs for health and well-being shouldn’t be dependent on such an unpredictable source of funds. It’s really a question of what is our shared commitment to the things people should have, regardless of whether they can be successful at crowdfunding,” Igra said. “It’s a good thing that people are helping, but people who aren’t being helped aren’t visible.”

The study was funded by the National Science Foundation, the Center for Studies in Demography & Ecology at the UW, and the School of Nursing and Health Studies at 91̽��Bothell. Additional co-authors were Cadence Luchsinger of the 91̽��Department of Health Services and Jin-Kyu Jung of the School of Interdisciplinary Arts and Sciences at 91̽��Bothell.

For more information, contact Igra at igra@uw.edu or Kenworthy at njk8@uw.edu.

A published February 8 in the journal 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 , assistant professor of nursing and health studies at the 91̽��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 , assistant professor in 91̽��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 , 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 . 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.”

###

For more information, contact Berliner at 619-301-5935 or lberliner@uwb.edu; or Kenworthy at 425-352-3621 or njk8@uw.edu.