Crowdfunding and global health disparities: an exploratory conceptual and empirical analysis

Kenworthy, Nora

doi:10.1186/s12992-019-0519-1

Cited by 39 publications

(33 citation statements)

References 42 publications

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“…In another publication, Kenworthy elaborates a more comprehensive conceptual model of how these disparities may come into play in the crowdfunding process, to which readers are referred for further conceptual analysis of these dynamics. (61)…”

Section: Potential Sources Of Bias and Disparity In Crowdfundingmentioning

confidence: 99%

A cross-sectional study of social inequities in medical crowdfunding campaigns in the United States

et al. 2020

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Americans are increasingly relying on crowdfunding to pay for the costs of healthcare. In medical crowdfunding (MCF), online platforms allow individuals to appeal to social networks to request donations for health and medical needs. Users are often told that success depends on how they organize and share their campaigns to increase social network engagement. However, experts have cautioned that MCF could exacerbate health and social disparities by amplifying the choices (and biases) of the crowd and leveraging these to determine who has access to financial support for healthcare. To date, research on potential axes of disparity in MCF, and their impacts on fundraising outcomes, has been limited. To answer these questions, this paper presents an exploratory cross-sectional study of a randomized sample of 637 MCF campaigns on the popular platform Gofundme, for which the race, gender, age, and relationships of campaigners and campaign recipients were categorized alongside campaign characteristics and outcomes. Using both descriptive and inferential statistics, the analysis examines race, gender, and age disparities in MCF use, and tests how these are associated with differential campaign outcomes. The results show systemic disparities in MCF use and outcomes: non-white users (and black women in particular) are under-represented; there is significant evidence of an additional digital care labor burden on women organizers of campaigns; and marginalized race and gender groups are associated with poorer fundraising outcomes. Outcomes are only minimally associated with campaign characteristics under users' control, such as photos, videos, and updates. These results corroborate widespread concerns how technology fuels health inequities, and about how crowdfunding may be creating an unequal and biased marketplace for those seeking financial support to access healthcare. Further research and better data access are needed to explore these dynamics more deeply and inform policy for this largely unregulated industry.

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Section: Potential Sources Of Bias and Disparity In Crowdfundingmentioning

confidence: 99%

A cross-sectional study of social inequities in medical crowdfunding campaigns in the United States

et al. 2020

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“…Medical crowdfunding has best been summarized as a technological, commercial and political determinant of health (Kenworthy 2019). As a technological determinant, crowdfunding platforms privilege those who have access to the technology and media skills to create effective online marketing campaigns.…”

Section: Prior Medical Crowdfunding Researchmentioning

confidence: 99%

“…As a technological determinant, crowdfunding platforms privilege those who have access to the technology and media skills to create effective online marketing campaigns. Technology also drives crowdfunding success, because crowdfunding companies use proprietary and unaccountable algorithms to highlight particular campaigns (Kenworthy 2019). As a commercial determinant, crowdfunding providers profit from the inadequacy of social welfare safety nets.…”

Section: Prior Medical Crowdfunding Researchmentioning

confidence: 99%

“…As a commercial determinant, crowdfunding providers profit from the inadequacy of social welfare safety nets. Crowdfunding campaigns also provide a public record of infirmity that might be used to discriminate against those seeking funds (Kenworthy 2019). Finally, from a political standpoint, Kenworthy (2019), amplifying Snyder et al (2016), fears that crowdfunding's premise of aid as something given by communities to those who are found deserving "shifts broader public values and discourses regarding health entitlements and citizen deservingness, consequently impacting efforts to ensure the right to health."…”

Section: Prior Medical Crowdfunding Researchmentioning

confidence: 99%

“…Crowdfunding campaigns also provide a public record of infirmity that might be used to discriminate against those seeking funds (Kenworthy 2019). Finally, from a political standpoint, Kenworthy (2019), amplifying Snyder et al (2016), fears that crowdfunding's premise of aid as something given by communities to those who are found deserving "shifts broader public values and discourses regarding health entitlements and citizen deservingness, consequently impacting efforts to ensure the right to health." Berliner and Kenworthy (2017) asked whether the ability to craft a compelling narrative and demonstrate "deservingness" is related to fundraising success.…”

Section: Prior Medical Crowdfunding Researchmentioning

confidence: 99%

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Donor Financial Capacity Drives Racial Inequality in Medical Crowdsourced Funding

Igra¹

2020

Preprint

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In 2018, over 250,000 American families found themselves unable to pay for medical care and turned to the online “crowdfunding” service GoFundMe to raise money online. The $650 million dollars raised from these medical campaigns appear to have filled a sizable hole in the American social safety net. Yet crowdfunding is at heart a network process, and a large body of research shows that social networks can reproduce inequality. In this paper I show that medical crowdfunding indeed replicates patterns of racial, ethnic, and geographic income stratification as predicted by network theory. Using 2,618 GoFundMe campaigns hand-coded for perceived race and ethnicity of the recipient, I show that Black and Hispanic beneficiaries receive substantially less money via their networks than White and Asian beneficiaries. Hierarchical linear models show that social network access via online sharing does not vary by race and ethnicity. Instead I find that unequal mobilization in terms of the number and size of donations accounts for unequal returns. Variations in the number of donations can largely be explained by differences in expected network financial capital, but variations in donation size are not fully accounted for even in models including proxies for network income. In a preliminary analysis, probabilistic estimates of donor race and ethnicity indicate that donors of all races and ethnicities tend to give White recipients the largest donations and Black recipients the smallest. Overall, I demonstrate the use of “crowd insurance” in place of sufficient medical insurance reproduces existing patterns of inequality.

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Characterizing online crowdfunding campaigns for patients with kidney cancer

et al. 2021

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Background Cancer patients incur high care costs; however, there is a paucity of literature characterizing unmet financial obligations for patients with urologic cancers. Kidney cancer patients are particularly burdened by costs associated with novel systemic treatments. This study aimed to ascertain the characteristics of GoFundMe® crowdfunding campaigns for patients with kidney cancer, in order to better understand the financial needs of this population. Methods We performed a cross‐sectional, quantitative, and qualitative analysis of all kidney cancer GoFundMe® campaigns since 2010. Fundraising metrics such as goal funds and amount raised, were extracted. Eight independent investigators collected patient, disease and campaign‐level variables from campaign stories (κ = 0.72). In addition, we performed a content analysis of campaign narratives spotlighting the primary appeal of the patient's life story. Results A total of 486 GoFundMe® kidney cancer campaigns were reviewed. The median goal funds were 10,000USD [IQR = 5000, 20,000] and the median amount raised was 1450USD [IQR = 578, 4050]. Most campaigns were for adult males (53%) and 62% of adults had children. A minority were for pediatric patients (17%). Thirty‐seven percent of adult patients were primary wage earners and 43% reported losing their job or substantially reducing hours due to illness. Twenty‐nine percent reported no insurance or insufficient coverage. Campaigns most frequently sought funds for medical bills (60%), nonmedical bills (27%), and medical travel (23%). Qualitative campaign narratives mostly emphasized patients’ hardship (46.3%) or high moral character (35.2%). Only 8% of campaigns achieved their target funds. Conclusions Despite fundraising efforts, patients with kidney cancer face persistent financial barriers, incurring both medical and nonmedical cost burdens. This may be compounded by limited or no insurance. Cancer care providers should be aware of financial constraints placed on kidney cancer patients, and consider how these may impact treatment regimens.

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Crowdfunding and global health disparities: an exploratory conceptual and empirical analysis

Cited by 39 publications

References 42 publications

A cross-sectional study of social inequities in medical crowdfunding campaigns in the United States

A cross-sectional study of social inequities in medical crowdfunding campaigns in the United States

Donor Financial Capacity Drives Racial Inequality in Medical Crowdsourced Funding

Characterizing online crowdfunding campaigns for patients with kidney cancer

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