Crowdfunding and global health disparities: an exploratory conceptual and empirical analysis.
ABSTRACT: BACKGROUND:The use of crowdfunding platforms to cover the costs of healthcare is growing rapidly within low-, middle-, and high-income countries as a new funding modality in global health. The popularity of such "medical crowdfunding" is fueled by health disparities and gaps in health coverage and social safety-net systems. Crowdfunding in its current manifestations can be seen as an antithesis to universal health coverage. But research on medical crowdfunding, particularly in global health contexts, has been sparse, and accessing robust data is difficult. To map and document how medical crowdfunding is shaped by, and shapes, health disparities, this article offers an exploratory conceptual and empirical analysis of medical crowdfunding platforms and practices around the world. Data are drawn from a mixed-methods analysis of medical crowdfunding campaigns, as well as an ongoing ethnographic study of crowdfunding platforms and the people who use them. RESULTS:Drawing on empirical data and case examples, this article describes three main ways that crowdfunding is impacting health equity and health politics around the world: 1) as a technological determinant of health, wherein data ownership, algorithms and platform politics influence health inequities; 2) as a commercial determinant of health, wherein corporate influence reshapes healthcare markets and health data; 3) and as a determinant of health politics, affecting how citizens view health rights and the future of health coverage. CONCLUSIONS:Rather than viewing crowdfunding as a social media fad or a purely beneficial technology, researchers and publics must recognize it as a complex innovation that is reshaping health systems, influencing health disparities, and shifting political norms, even as it introduces new ways of connecting and caring for those in the midst of health crises. More analysis, and better access to data, is needed to inform policy and address crowdfunding as a source of health disparities.
Project description: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: people of color (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 with how technology fuels health inequities, and 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.
Project description:BACKGROUND:There are a range of perceived gaps and shortcomings in the publicly funded Canadian health system. These include wait times for care, lack of public insurance coverage for dental care and pharmaceuticals, and difficulties accessing specialist care. Medical crowdfunding is a response to these gaps where individuals raise funds from their social networks to address health-related needs. OBJECTIVE:This study aimed to investigate the potential of crowdfunding data to better understand what health-related needs individuals are using crowdfunding for, how these needs compare with the existing commentary on health system deficiencies, and the advantages and limitations of using crowdfunding campaigns to enhance or augment our understanding of perceived health system deficiencies. METHODS:Crowdfunding campaigns were scraped from the GoFundMe website. These campaigns were then limited to those originating in the metropolitan Vancouver region of two health authorities during 2018. These campaigns were then further limited to those raising funds to allow the treatment of a medical problem or related to needs arising from ill health. These campaigns were then reviewed to identify the underlying health issue and motivation for pursuing crowdfunding. RESULTS:We identified 423 campaigns for health-related needs. These campaigns requested CAD $8,715,806 (US $6,088,078) in funding and were pledged CAD $3,477,384 (US $2,428,987) from 27,773 donors. The most common underlying medical condition for campaign recipients was cancer, followed by traumatic injuries from collisions and brain injury and stroke. By far, the most common factor of motivation for crowdfunding was seeking financial support for wages lost because of illness (232/684, 33.9%). Some campaigns (65/684, 9.5%) sought help with purchasing medical equipment and supplies; 8.2% (56/684) sought to fund complementary, alternative, or unproven treatments including experimental interventions; 7.2% (49/684) sought financial support to cover travel-related costs, including in-province and out-of-province (49/684, 7.2%) travel; and 6.3% (43/684) campaigns sought help to pay for medication. CONCLUSIONS:This analysis demonstrates the potential of crowdfunding data to present timely and context-specific user-created insights into the perceived health-related financial needs of some Canadians. Although the literature on perceived limitations of the Canadian health system focuses on wait times for care and limited access to specialist services, among other issues, these campaigners were much more motivated by gaps in the wider social system such as costs related to unpaid time off work and travel to access care. Our findings demonstrate spatial differences in the underlying medical problems, motivations for crowdfunding, and success using crowdfunding that warrants additional attention. These differences may support established concerns that medical crowdfunding is most commonly used by individuals from relatively privileged socioeconomic backgrounds. We encourage the development of new resources to harness the power of crowdfunding data as a supplementary source of information for Canadian health system stakeholders.
Project description:Online crowdfunding platforms such as GoFundMe are used to raise funds for health-related expenses associated with medical conditions such as organ transplantation. By investigating crowdfunding in Canadian organ transplantation, this study aimed to increase understanding of the motivations and outcomes of organ transplantation crowdfunding. Canadian liver and kidney transplantation campaigns posted to GoFundMe between May 30 & 31 2018 were identified and after exclusion, 258 kidney and 171 liver campaigns were included in study. These campaigns were coded for: worthiness of the campaign recipient, requested financial and non-monetary contributions, how monetary donations would be spent, and comments on the Canadian health system, among others. Results suggest Canadian organ donors, transplant candidates, recipients, and their families and caregivers experience significant financial difficulties not addressed by the public health system. Living and medication costs, transportation and relocation expenses, and income loss were the expenses most commonly highlighted by campaigners. Liver campaigns raised nearly half their goal while kidney campaigns received 11.5% of their requested amount. Findings highlight disease burden and the use of crowdfunding as a response to the extraordinary costs associated with organ transplantation. Although crowdfunding reduces some financial burden, it does not do so equitably and raises ethical concerns.
Project description:OBJECTIVES:Medical crowdfunding is a rapidly growing practice where individuals leverage social networks to raise money for health-related needs. This practice has allowed many to access healthcare and avoid medical debt but has also raised a number of ethical concerns. A dominant criticism of this practice is that it is likely to increase inequities in access to healthcare if persons from relatively wealthy backgrounds, media connections, tech-savvy and educational attainments are best positioned to use and succeed with crowdfunding. However, limited data has been published to support this claim. Our objective in this paper is to assess this concern using socioeconomic data and information from crowdfunding campaigns. SETTING:To assess this concern, we present an exploratory spatial analysis of a new dataset of crowdfunding campaigns for cancer-related care by Canadian residents. PARTICIPANTS:Four datasets were used: (1) a medical crowdfunding dataset that included cancer-related campaigns posted by Canadians, (2) 2016 Census Profile for aggregate dissemination areas, (3) aggregate dissemination area boundaries and (4) forward sortation area boundaries. RESULTS:Our exploratory spatial analysis demonstrates that use of crowdfunding for cancer-related needs in Canada corresponds with high income, home ownership and high educational attainment. Campaigns were also commonly located near city centres. CONCLUSIONS:These findings support concerns that those in positions of relative socioeconomic privilege disproportionately use crowdfunding to address health-related needs. This study was not able to determine whether other socioeconomic dimensions such as race, gender, ethnicity, nationality and linguistic fluency are also correlated with use of medical crowdfunding. Thus, we call for further research to explore the relationship between socioeconomic variables and medical crowdfunding campaigning to explore these other socioeconomic variables and campaigns for needs unrelated to cancer.
Project description:BACKGROUND:Medical crowdfunding has emerged as a growing field for fundraising opportunities. Some environmental trends have driven the emergence of campaigns to raise funds for medical care. These trends include lack of medical insurance, economic backlash following the 2008 financial collapse, and shortcomings of health care regulations. OBJECTIVE:Research regarding crowdfunding campaign use, reasons, and effects on the provision of medical care and individual relationships in health systems is limited. This study aimed to explore the nature and dimensions of the phenomenon of medical crowdfunding using a visual analytics approach and data crawled from the GoFundMe crowdfunding platform in 2019. We aimed to explore and identify the factors that contribute to a successful campaign. METHODS:This data-driven study used a visual analytics approach. It focused on descriptive analytics to obtain a panoramic insight into medical projects funded through the GoFundMe crowdfunding platform. RESULTS:This study highlighted the relevance of positioning the campaign for fundraising. In terms of motivating donors, it appears that people are typically more generous in contributing to campaigns for children rather than those for adults. The results emphasized the differing dynamics that a picture posted in the campaign brings to the potential for medical crowdfunding. In terms of donor's motivation, the results show that a picture depicting the pediatric patient by himself or herself is the most effective. In addition, a picture depicting the current medical condition of the patient as severe is more effective than one depicting relative normalcy in the condition. This study also drew attention to the optimum length of the title. Finally, an interesting trend in the trajectory of donations is that the average amount of a donation decreases with an increase in the number of donors. This indicates that the first donors tend to be the most generous. CONCLUSIONS:This study examines the relationship between social media, the characteristics of a campaign, and the potential for fundraising. Its analysis of medical crowdfunding campaigns across the states offers a window into the status of the country's health care affordability. This study shows the nurturing role that social media can play in the domain of medical crowdfunding. In addition, it discusses the drivers of a successful fundraising campaign with respect to the GoFundMe platform.
Project description:Importance:Despite major differences in their health care systems, medical crowdfunding is increasingly used to finance personal health care costs in Canada, the UK, and the US. However, little is known about the campaigns designed to raise monetary donations for medical expenses, the individuals who turn to crowdfunding, and their fundraising intent. Objective:To examine the demographic characteristics of medical crowdfunding beneficiaries, campaign characteristics, and their association with funding success in Canada, the UK, and the US. Design, Setting, and Participants:This cross-sectional study extracted and manually reviewed data from GoFundMe campaigns discoverable between February 2018 and March 2019. All available campaigns on each country domain's GoFundMe medical discovery webpage that benefitted a unique patient(s) were included from Canada, the UK, and the US. Data analysis was performed from March to December 2019. Exposures:Campaign and beneficiary characteristics. Main Outcomes and Measures:Log-transformed amount raised in US dollars. Results:This study examined 3396 campaigns including 1091 in Canada, 1082 in the UK, and 1223 in the US. Campaigns in the US (median [IQR], $38?204 [$31?200 to $52?123]) raised more funds than campaigns in Canada ($12?662 [$9377 to $19?251]) and the UK ($6285 [$4028 to $12?348]). In the overall cohort per campaign, Black individuals raised 11.5% less (95% CI, -19.0% to -3.2%; P?=?.006) than non-Black individuals, and male individuals raised 5.9% more (95% CI, 2.2% to 9.7%; P?=?.002) than female individuals. Female (39.4% of campaigns vs 50.8% of US population; difference, 11.3%; 95% CI, 8.6% to 14.1%; P?<?.001) and Black (5.3% of campaigns vs 13.4% of US population; difference, 8.1%; 95% CI, 6.8% to 9.3%; P?<?.001) beneficiaries were underrepresented among US campaigns. Campaigns primarily for routine treatment expenses were approximately 3 times more common in the US (77.9% [272 of 349 campaigns]) than in Canada (21.9% [55 of 251 campaigns]; difference, 56.0%; 95% CI, 49.3-62.7%; P < .001) or the UK (26.6% [127 of 478 campaigns]; difference, 51.4%; 95% CI, 45.5%-57.3%; P < .001). However, campaigns for routine care were less successful overall. Approved, inaccessible care and experimental care raised 35.7% (95% CI, 25.6% to 46.7%; P?<?.001) and 20.9% (95% CI, 13.3% to 29.1%; P?<?.001), respectively, more per campaign than routine care. Campaigns primarily for alternative treatment expenses (16.1% [174 of 1079 campaigns]) were nearly 4-fold more common for cancer (23.5% [144 of 614 campaigns]) vs noncancer (6.5% [30 of 465 campaigns]) diagnoses. Conclusions and Relevance:Important differences were observed in the reasons individuals turn to medical crowdfunding in the 3 countries examined that suggest racial and gender disparities in fundraising success. More work is needed to understand the underpinnings of these findings and their implications on health care provision in the countries examined.
Project description:The United Nations' Sustainable Development Goals (SDGs) highlight priority areas for global sustainable development, such as reducing inequalities and protecting the environment. Digital platforms, such as Goteo.org, facilitate financial support from individuals for SDG-related initiatives through crowdfunding and match-funding campaigns. Match-funding is a type of crowdfunding, where individual donations are matched or multiplied by public and private organizations. There remains a lack of open data, however, to study the effectiveness of match-funding as a way to finance these civic initiatives. The Goteo.org platform's approach to data transparency and open source principles have allowed these data to be collected, and here we present a dataset for 487 civic crowdfunding campaigns. This dataset presents a unique opportunity to compare the behaviour of different crowdfunding modalities in parallel with the SDGs.
Project description:Crowdfunding has gained traction as a mechanism to raise resources for entrepreneurial and artistic projects, yet there is little systematic evidence on the potential of crowdfunding for scientific research. We first briefly review prior research on crowdfunding and give an overview of dedicated platforms for crowdfunding research. We then analyze data from over 700 campaigns on the largest dedicated platform, Experiment.com. Our descriptive analysis provides insights regarding the creators seeking funding, the projects they are seeking funding for, and the campaigns themselves. We then examine how these characteristics relate to fundraising success. The findings highlight important differences between crowdfunding and traditional funding mechanisms for research, including high use by students and other junior investigators but also relatively small project size. Students and junior investigators are more likely to succeed than senior scientists, and women have higher success rates than men. Conventional signals of quality-including scientists' prior publications-have little relationship with funding success, suggesting that the crowd may apply different decision criteria than traditional funding agencies. Our results highlight significant opportunities for crowdfunding in the context of science while also pointing towards unique challenges. We relate our findings to research on the economics of science and on crowdfunding, and we discuss connections with other emerging mechanisms to involve the public in scientific research.
Project description:BACKGROUND:Genetic sequencing is critically important to diagnostic health care efforts in the United States today, yet it is still inaccessible to many. Meanwhile, the internet and social networking have made crowdfunding a realistic avenue for individuals and groups hoping to fund medical and research causes, including patients in need of whole exome genetic sequencing (WES). OBJECTIVE:Amplify Hope is an educational program designed to investigate what factors affect the success of medical crowdfunding campaigns. We conducted a needs assessment, a series of 25 interviews concerning crowdfunding, and provided training on best practices identified through our assessment for 11 individuals hoping to run their medical crowdfunding campaigns to raise money for patients to access trio WES to identify the mutated proteins that caused their apparent inherited disease. METHODS:The crowdfunding education was given in a 30-day training period with resources such as webinars, fact sheets and a crowdfunding training guide emailed to each participant. All campaigns were launched on the same date and were given 30 days to raise the same goal amount of US $5000. Reviewing the 4 crowdfunding campaigns that raised the goal amount within the 30-day period, we sought to identify features that made the 4 crowdfunding campaigns successful. In addition, we sought to assess which factors the resulting 75 donors report as influencing their decision to donate to a campaign. Finally, we investigated whether crowdfunding campaigns for exome sequencing had an impact on increasing applicant's and donors' knowledge of genomics. RESULTS:Of the 86 study inquiries, 11 participants submitted the required forms and launched their crowdfunding campaigns. A total of 4 of the 11 campaigns raised their goal amounts within 30 days. CONCLUSIONS:We found that social media played an important role in all campaigns. Specifically, a strong social media network, an active outreach process to networks, as well as engagement within the study all correlated with a higher success rate. Amplify Hope donors were more likely to support projects that were near their fundraising goals, and they found video far more effective for learning about genomics than any other medium.
Project description:BACKGROUND:Medical crowdfunding is a growing phenomenon, and newspapers are publishing on the topic. This research analyzed how illness-related crowdfunding and crowdfunding campaigns have recently been represented in newspapers that are popular in the United States and Canada. METHODS:A sample of 336 articles about medical crowdfunding published during the two year time period from October 7, 2015 to October 6, 2017 was produced using a Factiva search of the English language newspapers with the largest Canadian and United States readership. A coding frame was developed for and applied to the sample to analyze content. RESULTS:Articles portrayed crowdfunding campaigns positively (43.75%) and neutrally (47.92%), but rarely negatively (4.76%). Articles mostly mentioned the crowdfunding phenomenon with a neutral characterization (93.75%). Few (8.63%) articles mentioned ethical issues with the phenomenon of crowdfunding. Ailments most commonly precipitating the need for a campaign included cancer (49.11%) and rare disease (as stated by the article, 36.01%). Most articles (83.04%) note where donations and contributions can be made, and 59.23% included a hyperlink to an online crowdfunding campaign website. Some articles (26.49%) mentioned a specific monetary goal for the fundraising campaign. Of the 70 (20.83%) articles that indicated the treatment sought may be inefficacious, was unproven, was experimental or lacked regulatory approval, 56 (80.00%) noted where contributions can be made and 36 (51.43%) hyperlinked directly to an online crowdfunding campaign. CONCLUSIONS:Crowdfunding campaigns are portrayed positively much more often than negatively, many articles promote campaigns for unproven therapies, and links directly to crowdfunding campaign webpages are present in most articles. Overall, crowdfunding is often either implicitly or explicitly endorsed.