Getting the crowd to care: Marketing illness through health-related crowdfunding in Aotearoa New Zealand

Abstract

Campaigns for personal health expenses make up the largest and fastest-growing segment of donation-based crowdfunding. Set against the backdrop of retrenchment and disinvestment in public healthcare systems across the global North, health-related crowdfunding is a way to navigate increasingly marketised systems of social reproduction. Despite high profile success stories, campaigns vary significantly in their ability to capture the hearts, and ultimately wallets, of donors. While existing analyses of online campaign pages offer some insight into the marketing of healthcare needs, far less is known about practices and experiences of crowdfunding platform users, including campaigners. Bringing literature on crowdfunding together with accounts of the marketisation of care, our paper asks: how do campaigners work to secure crowdfunded healthcare? Through the accounts of 15 people campaigning on behalf of family or friends in Aotearoa New Zealand, we show how attempts to appeal to donors depend on campaigners’ abilities to ‘market’ illness and need in ways that resonate with the crowd. We have two main foci. First, we examine the responsibility and responsibilisation of campaigners to engage and perform accountability to crowdfunders. Second, we show how campaigners mobilise recipients’ traits of deservingness and other culturally favoured personal qualities to appeal to the crowd's perceived predilections. In sum, the paper demonstrates how the use of crowdfunding is both necessitated by the marketisation of healthcare while simultaneously exerting its own form of market discipline.

The Use of Medical Crowdfunding to Mitigate the Personal Costs of Serious Chronic Illness: Scoping Review

“…These studies analyzed either the narrative description written by the campaigner (a component of online talk; 20/20, 100%) [ 1 , 25 , 27 - 41 , 46 - 48 ] or reported campaign outcomes (eg, the goal amount of funds, the number of social media shares, and the amount of funds raised; 19/20, 95%) [ 1 , 25 , 27 - 41 , 47 , 48 ]. Of the 26 studies, 1 (4%) [ 43 ] analyzed campaign outcomes alongside data from other sources such as census data, 2 (8%) [ 3 , 45 ] conducted interviews with MCF beneficiaries and campaigners, and 1 (4%) [ 26 ] used web-based methods to survey beneficiaries about their experiences with MCF.…”

“…The reasons for exemption included the following: data were publicly available, data were deidentified, the researchers had no direct contact with participants, and the study was deemed as not involving human participants. Of the 26 studies, 11 (42%) [ 27 , 30 , 32 , 33 , 37 , 38 , 40 , 42 , 44 , 47 , 48 ] did not mention communicating with an IRB about the study, whereas 10 (38%) [ 1 , 3 , 28 , 31 , 34 , 35 , 39 , 43 , 45 , 46 ] mentioned communication with their IRB but were unclear about the nature of the review (expedited or full) and the requirements for continuing the review. Of the 26 studies, 8 (31%) [ 1 , 3 , 26 , 36 , 38 , 43 , 45 , 46 ] elaborated on strategies to minimize risks to individuals’ privacy and the confidentiality of their data.…”

“…Of the 26 studies, 11 (42%) [ 27 , 30 , 32 , 33 , 37 , 38 , 40 , 42 , 44 , 47 , 48 ] did not mention communicating with an IRB about the study, whereas 10 (38%) [ 1 , 3 , 28 , 31 , 34 , 35 , 39 , 43 , 45 , 46 ] mentioned communication with their IRB but were unclear about the nature of the review (expedited or full) and the requirements for continuing the review. Of the 26 studies, 8 (31%) [ 1 , 3 , 26 , 36 , 38 , 43 , 45 , 46 ] elaborated on strategies to minimize risks to individuals’ privacy and the confidentiality of their data. Such strategies included deidentifying data, storing data on password-protected encrypted drives, reporting results in summary form, changing or removing quotations so that identities were not easily discoverable through search engines, and using pseudonyms in the data and reports of study results.…”

“…In addition, adolescent and young adult survivors of cancer explained that there were trade-offs between feeling humiliated and benefiting from the funds raised [ 26 ]. Such trade-offs included a loss of beneficiary privacy [ 26 , 40 , 45 ] and tensions regarding disclosing what is necessary to secure funds without divulging too much. Campaigners also described feeling pressured to maintain their campaign, communicate the beneficiaries’ deservingness to receive funds, and show fiscal accountability to donors while maintaining some modicum of privacy for the beneficiaries [ 45 ].…”

Social Distancing, Interaction, and (Un)crowded Public Space in Mass Transit in Ho Chi Minh City, Vietnam

“…Making gifts to government of cash, goods, and equipment, or volunteering work hours, are forms of crowdfunding that enable state service provision. Crowdfunding for costly medical treatments, medical anthropologistsNeuwelt-Kearns et al (2021) report, acts as a social mechanism for donors to exhibit their care for people and to affirm the deservingness of the patient. In the context of pandemic prevention, co-funding also offers donors opportunities to show pro-state support and patriotism by contributing to the public health needs of fellow citizens, although without knowing the potential recipients of treatment personally.…”