Decades ago, if someone had trouble affording a medical procedure or paying a child’s hospital bill, friends and community members sometimes organized bake sales, car washes or other fundraisers to help out.
Today, individuals facing high health care costs can crowdfund by going online to ask people around the world for donations. Among the most popular crowdfunding platforms is GoFundMe, which, according to its website, has helped millions of people raise more than $3 billion for different causes. Some crowdfunding platforms were created specifically to assist with medical costs. The non-profit Help Hope Live, for example, was launched to help with expenses related to cell and organ transplants or catastrophic injuries and illnesses.
While medical crowdfunding appears to have many benefits, some critics argue it may offer an unfair advantage to individuals with better technology skills and broader social networks as well as those who are photogenic or have the most emotionally appealing stories. Michael J. Young of Harvard Medical School and Ethan Scheinberg of Harvard Law School outline their concerns, including ethical issues, in an April 2017 editorial in the Journal of the American Medical Association, “The Rise of Crowdfunding for Medical Care: Promises and Perils.”
Below is a sampling of academic research that examines medical crowdfunding from several angles, including its usefulness in helping transgender individuals raise money for surgery. Some other helpful resources are this 2011 paper from the National Bureau of Economic Research, which suggests one quarter of Americans could not come up with $2,000 in 30 days if an unexpected need arose, and this 2016 paper published in Health Affairs, which looks at personal bankruptcy among working-age cancer survivors.
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“’Better Everyone Should Know Our Business than We Lose Our House’: Costs and Benefits of Medical Crowdfunding for Support, Privacy, and Identity”
Gonzales, Amy L.; Kwon, Elizabeth Y.; Lynch, Teresa; Fritz, Nicole. New Media & Society, 2016. DOI: 10.1177/1461444816667723.
Abstract: “In the United States, medical crowdfunding is an increasingly common response to overwhelming healthcare costs. Semi-structured interviews were conducted with 30 individuals crowdfunding for health (e.g. cancer, paralysis, brain injury) on behalf of themselves or others, to better understand this new phenomenon as it informs theory on social support, identity, and privacy. First, findings suggest that crowdfunding is often a resource for both instrumental and emotional social support. Second, many crowdfunders weighed the need for support against perceived privacy risks, which is consistent with and extends privacy calculus theory. Finally, highly vulnerable self-disclosures were often reinterpreted to be empowering, which also supports and extends work on identity shift. Using crowdfunding as a context for inquiry, findings point to new theoretical frameworks to describe how users navigate needs for both privacy and support online and the often positive consequences of that negotiation for identity.”
“Producing a Worthy Illness: Personal Crowdfunding Amidst Financial Crisis”
Berliner, Lauren S.; Kenworthy, Nora J. Social Science & Medicine, 2017. DOI: 10.1016/j.socscimed.2017.02.008.
Abstract: “For Americans experiencing illnesses and disabilities, crowdfunding has become a popular strategy for addressing the extraordinary costs of health care. The political, social, and health consequences of austerity — along with fallout from the 2008 financial collapse and the shortcomings of the Affordable Care Act (ACA) — are made evident in websites like GoFundMe. Here, patients and caregivers create campaigns to solicit donations for medical care, hoping that they will spread widely through social networks. As competition increases among campaigns, patients and their loved ones are obliged to produce compelling and sophisticated appeals. Despite the growing popularity of crowdfunding, little research has explored the usage, impacts, or consequences of the increasing reliance on it for health in the U.S. or abroad. This paper analyzes data from a mixed-methods study conducted from March-September 2016 of 200 GoFundMe campaigns, identified through randomized selection. In addition to presenting exploratory quantitative data on the characteristics and relative success of these campaigns, a more in-depth textual analysis examines how crowdfunders construct narratives about illness and financial need, and attempt to demonstrate their own deservingness. Concerns with the financial burdens of illness, combined with a high proportion of campaigns in states without ACA Medicaid expansion, underscored the importance of crowdfunding as a response to contexts of austerity. Successful crowdfunding requires that campaigners master medical and media literacies; as such, we argue that crowdfunding has the potential to deepen social and health inequities in the U.S. by promoting forms of individualized charity that rely on unequally-distributed literacies to demonstrate deservingness and worth. Crowdfunding narratives also distract from crises of healthcare funding and gaping holes in the social safety net by encouraging hyper-individualized accounts of suffering on media platforms where precarity is portrayed as the result of inadequate self-marketing, rather than the inevitable consequences of structural conditions of austerity.”
“Appealing to the Crowd: Ethical Justifications in Canadian Medical Crowdfunding Campaigns”
Snyder, Jeremy; Crooks, Valorie A.; Mathers, Annalise; Chow-White, Peter. Journal of Medical Ethics, 2017. DOI: 10.1136/medethics-2016-103933.
Abstract: “Medical crowdfunding is growing in terms of the number of active campaigns, amount of funding raised and public visibility. Little is known about how campaigners appeal to potential donors outside of anecdotal evidence collected in news reports on specific medical crowdfunding campaigns. This paper offers a first step towards addressing this knowledge gap by examining medical crowdfunding campaigns for Canadian recipients. Using 80 medical crowdfunding campaigns for Canadian recipients, we analyze how Canadians justify to others that they ought to contribute to funding their health needs. We find the justifications tend to fall into three themes: personal connections, depth of need and giving back. We further discuss how these appeals can be understood in terms of ethical justifications for giving and how these justifications should be assessed in light of the academic literature on ethical concerns raised by medical crowdfunding.”
“Prioritizing Flexibility and Intangibles: Medical Crowdfunding for Stigmatized Individuals”
Gonzalez, Amy; Fritz, Nicole. Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems, 2017. DOI: 10.1145/3025453.3025647.
Abstract: “HCI research on crowdfunding has primarily focused on creative or organizational endeavors. Yet a majority of crowdfunding campaigns are conducted by individuals in need, often for healthcare. To better understand and improve this common crowdfunding experience, especially for those that inhabit a vulnerable social status, we conducted 20 interviews with transmen crowdfunding for top-surgery. Design choices that optimize site flexibility (e.g. control of personal information; enable cross-site communication) and foreground intangibles, such as political values and emotional support, are priorities for individuals from a stigmatized community. Findings differed from previous crowdfunding research and contribute to limited research on transgender identities in HCI. Overall they provide unique insights into how design choices can facilitate marginalized identity management in highly public online spaces.”
“The Power of Collective Endorsements: Credibility Factors in Medical Crowdfunding Campaigns”
Kim, Jennifer G.; et al. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, 2016. DOI: 10.1145/2858036.2858289.
Abstract: “Traditional medical fundraising charities have been relying on third-party watchdogs and carefully crafting their reputation over time to signal their credibility to potential donors. As medical fundraising campaigns migrate to online platforms in the form of crowdfunding, potential donors can no longer rely on the organization’s traditional methods for achieving credibility. Individual fundraisers must establish credibility on their own. Potential donors, therefore, seek new factors to assess the credibility of crowdfunding campaigns. In this paper, we investigate current practices in assessing the credibility of online medical crowdfunding campaigns. We report results from a mixed-methods study that analyzed data from social media and semi-structured interviews. We discovered eleven factors associated with the perceived credibility of medical crowdfunding. Of these, three communicative/emotional factors were unique to medical crowdfunding. We also found a distinctive validation practice, the collective endorsement. Close-connections’ online presence and external online communities come together to form this collective endorsement in online medical fundraising campaigns. We conclude by describing how fundraisers can leverage collective endorsements to improve their campaigns’ perceived credibility.”
“Reducing Medical Bankruptcy Through Crowdfunding: Evidence from GiveForward”
Burtch, Gordon; Chan, Jason. Research paper published in the 35th International Conference on Information Systems “Building a Better World Through Information Systems,” 2014.
Abstract: “An estimated 62 percent of individual bankruptcy filings in the United States were a direct result of costs borne from medical treatment following illness or injury. We consider the potential of online crowdfunding to alleviate the issue, wherein patients reach out to their social network for monetary support to help cover medical bills. We examine the effect of medical crowdfunding using proprietary data from one of the largest medical crowdfunding platforms, GiveForward.com, combined with state records of bankruptcy filing. Controlling for a variety of socioeconomic indicators, we find evidence that fundraising helped prevent between 114 and 136 bankruptcies across the U.S., per quarter, representing 3.9 percent of all medical related bankruptcies. Further, we explore the relationship between crowdfunding and public health insurance, finding evidence of a substitution effect when health insurance coverage is high. We discuss the implications of our findings for healthcare policy and crowdfunding.”
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