Like a Grinding Stone: How Crowdfunding Platforms Create, Perpetuate, and Value Health Inequities

Abstract

This article explores how inequities are reproduced by, and valued within, the increasingly ubiquitous world of medical crowdfunding. As patients use platforms like GoFundMe to solicit donations for health care, success stories inundate social media. But most crowdfunders experience steep odds and marginal benefits. Drawing on the problematic figure of the "black box" in health disparities research and technology studies, I offer ethnography as a tool for unpacking often inscrutable and complex pathways through which online platforms amplify inequities. By leveraging both online and traditional research strategies-a platform analysis and paired narratives of crowdfunders' disparate experiences, drawn from open-ended interviews-this article explores how inequities are created and experienced by users. The analysis highlights how inequities are simultaneously central to the functioning of this marketplace and occluded by its platform design. Consequently, crowdfunding is concealing health inequities while shifting public values about who is entitled to health care, and why. [crowdfunding, health insurance, health inequities, charity, digital technology]

Doing ‘our bit’: Solidarity, inequality, and COVID-19 crowdfunding for the UK National Health Service

“…We prioritised thematic analysis of a large number of pages over, for example, pursuing qualitative interviews with a sample of page creators. Crowdfunding studies have demonstrated that interviews add depth and context to the stories presented on fundraising pages ( Kenworthy, 2021 ; Kerr et al, 2021 ). However the NHS COVID-19 appeal is distinct from personal crowdfunders where intimate details of people's lives are shared ( Berliner and Kenworthy, 2017 ; Kerr et al, 2021 ).…”

“…Sociological analyses of crowdfunding for individual healthcare needs has focused on the dynamics of fundraising as a social practice. Fundraising platforms are interpreted as stages on which illness narratives are performed, specifically combined within narratives of the individual's good character and worthiness ( Berliner and Kenworthy, 2017 ; Kenworthy, 2021 ; Paulus and Roberts, 2018 ). Discursive strategies to promote the deservingness of a cause ( Kerr et al, 2021 ) can create a burden on already sick individuals, who are required to prove their legitimacy and their gratitude ( Kenworthy, 2021 ; Kerr et al, 2021 ).…”

“…Fundraising platforms are interpreted as stages on which illness narratives are performed, specifically combined within narratives of the individual's good character and worthiness ( Berliner and Kenworthy, 2017 ; Kenworthy, 2021 ; Paulus and Roberts, 2018 ). Discursive strategies to promote the deservingness of a cause ( Kerr et al, 2021 ) can create a burden on already sick individuals, who are required to prove their legitimacy and their gratitude ( Kenworthy, 2021 ; Kerr et al, 2021 ). While much of this literature is highly critical, it is also acknowledged that fundraisers may find the process generative of “new solidarities” ( Kerr et al, 2021 ).…”

“…In recent years the focus of this scholarship has expanded from analyses of the individual practices of healthcare crowdfunding, to critical assessment of the role of the digital platforms which invite and curate the campaigns. Kenworthy (2021) highlights the choices fundraisers make, from a culturally-circumscribed set of options, in order to demonstrate their worthiness, but additionally interrogates how the platform's algorithm mobilises affective prompts (‘likes’, hearts and claims about it being “powered by kindness”) to shape fundraiser and donor actions. She concludes that GoFundMe “alter[s] the way that our societies recognize and validate the needs of others”( Kenworthy, 2021 ).…”

“… Kenworthy (2021) highlights the choices fundraisers make, from a culturally-circumscribed set of options, in order to demonstrate their worthiness, but additionally interrogates how the platform's algorithm mobilises affective prompts (‘likes’, hearts and claims about it being “powered by kindness”) to shape fundraiser and donor actions. She concludes that GoFundMe “alter[s] the way that our societies recognize and validate the needs of others”( Kenworthy, 2021 ). Igra et al (2021) augment a quantitative analysis of campaign success in the US with in-depth analyses of fifty successful campaigns.…”