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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.

SUBMITTER: Kenworthy NJ

PROVIDER: S-EPMC6882318 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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

Kenworthy Nora J NJ

Globalization and health 20191128 Suppl 1

<h4>Background</h4>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 hea ...[more]

PMID: 31775896

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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:There has been growing recognition of the popularity of medical crowdfunding and research documenting how crowdfunding arises from, and contributes to, social and health inequities. While many researchers have surmised that racism could well play a role in medical crowdfunding campaign outcomes, research on these dynamics has been limited. No research to date has examined these dynamics among the most successful medical crowdfunding campaigns, focusing instead on average users' experiences or specific patient subpopulations. This paper analyzes key characteristics and demographics of the 827 most successful medical crowdfunding campaigns captured at a point in time in 2020 on the popular site GoFundMe, creating the first demographic archetype of "viral" or highly successful campaigns. We hypothesized that this sample would skew towards whiter, younger populations, more heavily represent men, and reflect critical illnesses and accidents affecting these populations, in addition to having visually appealing, well-crafted storytelling. Analysis supported these hypotheses, showing significant levels of racial and gender disparities among campaigners. While white men had the greatest representation, Black and Asian users, and black women in particular, were highly underrepresented. Like other studies, we find evidence that racial and gender disparities persist in terms of campaign outcomes as well. Alongside this quantitative analysis, a targeted discourse analysis revealed campaign narratives and comments reinforced racist and sexist tropes of selective deservingness. These findings add to growing calls for more health research into the ways that social media technologies shape health inequities for historically marginalized and disenfranchised populations. In particular, we underscore how successful crowdfunding campaigns, as a both a means of raising funds for health and a broader site of public engagement, may deepen and normalize gendered and racialized inequities. In this way, crowdfunding can be seen as a significant technological amplifier of the fundamental social causes of health disparities.

Project description:BackgroundThere is debate over the effectiveness of deworming children against soil-transmitted helminthiasis (STH) to improve health outcomes, and current evidence may be limited in study design and generalizability. However, programmatic deworming continues throughout low and middle-income countries.Methodology and principal findingsWe performed an empirical evaluation of the relationship between deworming in pre-school age children (ages 1-4 years) within the previous 6 months, as proxy-reported by the mother, and health outcomes of weight, height, and hemoglobin. We used nationally representative cross-sectional data from 45 countries using the Demographic and Health Surveys (DHS) during the period 2005-2016. We used logistic regression with coarsened exact matching, fixed effects for survey and year, and person-level covariates. We included data on 325,115 children in 45 STH-endemic countries from 66 DHS surveys. Globally in STH-endemic countries, children who received deworming treatment were less likely to be stunted (1.2 percentage point decline from mean of 36%; 95% CI [-1.9, -0.5%]; p<0.001), but we did not detect consistent associations between deworming and anemia or weight. In sub-Saharan Africa, we found that children who received deworming treatment were less likely to be stunted (1.1 percentage point decline from mean of 36%; 95% CI [-2.1, -0.2%]; p = 0.01) and less likely to have anemia (1.8 percentage point decline from mean of 58%; 95% CI [-2.8, -0.7%]; p<0.001), but we did not detect consistent associations between deworming and weight. These findings were robust across multiple statistical models, and we did not find consistently measurable associations with data from non-endemic settings.Conclusions and significanceAmong pre-school age children, we detected a robust and consistent association between deworming and reduced stunting, with additional evidence for reduced anemia in sub-Saharan Africa. We did not find a consistent relationship between deworming and improved weight. This global empirical analysis provides evidence to support the deworming of pre-school age children.

Project description:BackgroundHealth care databases contain a wealth of information that can be used to develop programs and mature health care systems. There is concern that the sensitive nature of health data (eg, ethnicity, reproductive health, sexually transmitted infections, and lifestyle information) can have significant impact on individuals if misused, particularly among vulnerable and marginalized populations. As academic institutions, nongovernmental organizations, and international agencies begin to collaborate with low- and middle-income countries to develop and deploy health information technology (HIT), it is important to understand the technical and practical security implications of these initiatives.ObjectiveOur aim is to develop a conceptual framework for risk stratification of global health data partnerships and HIT projects. In addition to identifying key conceptual domains, we map each domain to a variety of publicly available indices that could be used to inform a quantitative model.MethodsWe conducted an overview of the literature to identify relevant publications, position statements, white papers, and reports. The research team reviewed all sources and used the framework method and conceptual framework analysis to name and categorize key concepts, integrate them into domains, and synthesize them into an overarching conceptual framework. Once key domains were identified, public international data sources were searched for relevant structured indices to generate quantitative counterparts.ResultsWe identified 5 key domains to inform our conceptual framework: State of HIT, Economics of Health Care, Demographics and Equity, Societal Freedom and Safety, and Partnership and Trust. Each of these domains was mapped to a number of structured indices.ConclusionsThere is a complex relationship among the legal, economic, and social domains of health care, which affects the state of HIT in low- and middle-income countries and associated data security risks. The strength of partnership and trust among collaborating organizations is an important moderating factor. Additional work is needed to formalize the assessment of partnership and trust and to develop a quantitative model of the conceptual framework that can help support organizational decision-making.

Project description:BackgroundGlobal health partnerships (GHP) between high or low-middle income countries are considered one of the best approaches to health systems strengthening. They typically involve highly skilled healthcare workers who volunteer to deliver capacity strengthening projects overseas, often in the form of peer-to-peer support through training and mentoring. Given GHP's strong focus on education and training, a common assumption is that training of trainers (ToT) is a strong predictor of sustainability because of its potential for up-skilling the workforce rapidly, cheaply and exponentially by developing local educators. Our aim is to test this assumption and identify the strengths and limitations of this approach by analysing qualitative data from a set of GHP funded by the UK Department for International Development through the Tropical Health and Education Trust.ResultsOur analysis identifies some of the common features of the ToT model and a number of limitations that can prevent it from being both effective and sustainable. Whilst most GHP strive for the long-term sustainability of the training by focusing on adequate training provision and support of local trainers, the wider issues that can facilitate or prevent the continuation of training are not always considered. We propose a conceptual framework (TRAIN) for ToT interventions to help inform practice and project evaluation. We illustrate the applicability of our framework through five case studies, each chosen to illustrate one aspect of the framework.ConclusionsTRAIN is intended as a starting point for further refinements and discussions about the factors affecting capacity building strategies based on training cascades. Although we envisage its usefulness to GHP as a guidance to design and operationalise ToT, we recognise that in practice it may be difficult to implement it in its entirety. The key message underlying TRAIN is that the sustainability of a cascade depends on a number of factors being present or developing at different operational levels during the course of a project. These are crucial to transform the opportunities that ToT affords to health systems in developing countries into the actual achievement of a training cascade that ultimately upskills the workforce and improves health outcomes in these countries.

Dataset Information

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

Publications

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

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