Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Kenworthy N

PROVIDER: S-EPMC7058302 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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

Kenworthy Nora N Dong Zhihang Z Montgomery Anne A Fuller Emily E Berliner Lauren L

PloS one 20200305 3

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 ...[more]

PMID: 32134984

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Project description:BackgroundWeb-based crowdfunding has become a popular method to raise money for medical expenses, and there is growing research interest in this topic. However, crowdfunding data are largely composed of unstructured text, thereby posing many challenges for researchers hoping to answer questions about specific medical conditions. Previous studies have used methods that either failed to address major challenges or were poorly scalable to large sample sizes. To enable further research on this emerging funding mechanism in health care, better methods are needed.ObjectiveWe sought to validate an algorithm for identifying 11 disease categories in web-based medical crowdfunding campaigns. We hypothesized that a disease identification algorithm combining a named entity recognition (NER) model and word search approach could identify disease categories with high precision and accuracy. Such an algorithm would facilitate further research using these data.MethodsWeb scraping was used to collect data on medical crowdfunding campaigns from GoFundMe (GoFundMe Inc). Using pretrained NER and entity resolution models from Spark NLP for Healthcare in combination with targeted keyword searches, we constructed an algorithm to identify conditions in the campaign descriptions, translate conditions to International Classification of Diseases, 10th Revision, Clinical Modification (ICD-10-CM) codes, and predict the presence or absence of 11 disease categories in the campaigns. The classification performance of the algorithm was evaluated against 400 manually labeled campaigns.ResultsWe collected data on 89,645 crowdfunding campaigns through web scraping. The interrater reliability for detecting the presence of broad disease categories in the campaign descriptions was high (Cohen κ: range 0.69-0.96). The NER and entity resolution models identified 6594 unique (276,020 total) ICD-10-CM codes among all of the crowdfunding campaigns in our sample. Through our word search, we identified 3261 additional campaigns for which a medical condition was not otherwise detected with the NER model. When averaged across all disease categories and weighted by the number of campaigns that mentioned each disease category, the algorithm demonstrated an overall precision of 0.83 (range 0.48-0.97), a recall of 0.77 (range 0.42-0.98), an F1 score of 0.78 (range 0.56-0.96), and an accuracy of 95% (range 90%-98%).ConclusionsA disease identification algorithm combining pretrained natural language processing models and ICD-10-CM code-based disease categorization was able to detect 11 disease categories in medical crowdfunding campaigns with high precision and accuracy.

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:BackgroundIn the United States (US), Medical Examiners and Coroners (ME/Cs) have the legal authority for the management of mass fatality incidents (MFI). Yet, preparedness and operational capabilities in this sector remain largely unknown. The purpose of this study was twofold; first, to identify appropriate measures of preparedness, and second, to assess preparedness levels and factors significantly associated with preparedness.MethodsThree separate checklists were developed to measure different aspects of preparedness: MFI Plan Elements, Operational Capabilities, and Pre-existing Resource Networks. Using a cross-sectional study design, data on these and other variables of interest were collected in 2014 from a national convenience sample of ME/C using an internet-based, anonymous survey. Preparedness levels were determined and compared across Federal Regions and in relation to the number of Presidential Disaster Declarations, also by Federal Region. Bivariate logistic and multivariable models estimated the associations between organizational characteristics and relative preparedness.ResultsA large proportion (42%) of respondents reported that less than 25 additional fatalities over a 48-hour period would exceed their response capacities. The preparedness constructs measured three related, yet distinct, aspects of preparedness, with scores highly variable and generally suboptimal. Median scores for the three preparedness measures also varied across Federal Regions and as compared to the number of Presidential Declared Disasters, also by Federal Region. Capacity was especially limited for activating missing persons call centers, launching public communications, especially via social media, and identifying temporary interment sites. The provision of staff training was the only factor studied that was significantly (positively) associated (p < .05) with all three preparedness measures. Although ME/Cs ranked local partners, such as Offices of Emergency Management, first responders, and funeral homes, as the most important sources of assistance, a sizeable proportion (72%) expected federal assistance.ConclusionsThe three measures of MFI preparedness allowed for a broad and comprehensive assessment of preparedness. In the future, these measures can serve as useful benchmarks or criteria for assessing ME/Cs preparedness. The study findings suggest multiple opportunities for improvement, including the development and implementation of national strategies to ensure uniform standards for MFI management across all jurisdictions.

Project description:BackgroundAvailable research suggests that menstrual inequity has an impact on (menstrual) health outcomes and emotional wellbeing. It is also a significant barrier to achieve social and gender equity and compromises human rights and social justice. The aim of this study was to describe menstrual inequities and their associations with sociodemographic factors, among women and people who menstruate (PWM) aged 18-55 in Spain.MethodsA cross-sectional survey-based study was conducted in Spain between March and July 2021. Descriptive statistical analyses and multivariate logistic regression models were performed.ResultsA total of 22,823 women and PWM were included in the analyses (Mean age = 33.2, SD = 8.7). Over half of the participants had accessed healthcare services for menstruation (61.9%). The odds for accessing menstrual-related services were significantly higher among participants with university education (aOR: 1.48, 95% CI, 1.13-1.95). Also, 57.8% reported having had partial or no menstrual education pre-menarche, with odds being higher among participants born in non-European or Latin American countries (aOR: 0.58, 95% CI, 0.36-0.93). Lifetime self-reported menstrual poverty was between 22.2-39.9%. Main risk factors for menstrual poverty were identifying as non-binary (aOR: 1.67, 95% CI, 1.32-2.11), being born in non-European or Latin American countries (aOR: 2.74, 95% CI, 1.77-4.24), and not having a permit to reside in Spain (aOR: 4.27, 95% CI, 1.94-9.38). Completed university education (aOR: 0.61, 95% CI, 0.44-0.84) and no financial hardship < 12 months (aOR: 0.06, 95% CI, 0.06-0.07) were protective factors for menstrual poverty. Besides, 75.2% reported having overused menstrual products due to lack of access to adequate menstrual management facilities. Menstrual-related discrimination was reported by 44.5% of the participants. Non-binary participants (aOR: 1.88, 95% CI, 1.52-2.33) and those who did not have a permit to reside in Spain (aOR: 2.11, 95% CI, 1.10-4.03) had higher odds of reporting menstrual-related discrimination. Work and education absenteeism were reported by 20.3% and 62.7% of the participants, respectively.ConclusionsOur study suggests that menstrual inequities affect a high number of women and PWM in Spain, especially those more socioeconomically deprived, vulnerabilised migrant populations and non-binary and trans menstruators. Findings from this study can be valuable to inform future research and menstrual inequity policies.

Project description:ObjectivesMedical 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.SettingTo assess this concern, we present an exploratory spatial analysis of a new dataset of crowdfunding campaigns for cancer-related care by Canadian residents.ParticipantsFour 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.ResultsOur 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.ConclusionsThese 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:BackgroundAs the number of COVID-19 cases increased precipitously in the United States, policy makers and health officials marshalled their pandemic responses. As the economic impacts multiplied, anecdotal reports noted the increased use of web-based crowdfunding to defray these costs.ObjectiveWe examined the web-based crowdfunding response in the early stage of the COVID-19 pandemic in the United States to understand the incidence of initiation of COVID-19-related campaigns and compare them to non-COVID-19-related campaigns.MethodsOn May 16, 2020, we extracted all available data available on US campaigns that contained narratives and were created between January 1 and May 10, 2020, on GoFundMe. We identified the subset of COVID-19-related campaigns using keywords relevant to the COVID-19 pandemic. We explored the incidence of COVID-19-related campaigns by geography, by category, and over time, and we compared the characteristics of the campaigns to those of non-COVID-19-related campaigns after March 11, when the pandemic was declared. We then used a natural language processing algorithm to cluster campaigns by narrative content using overlapping keywords.ResultsWe found that there was a substantial increase in overall GoFundMe web-based crowdfunding campaigns in March, largely attributable to COVID-19-related campaigns. However, as the COVID-19 pandemic persisted and progressed, the number of campaigns per COVID-19 case declined more than tenfold across all states. The states with the earliest disease burden had the fewest campaigns per case, indicating a lack of a case-dependent response. COVID-19-related campaigns raised more money, had a longer narrative description, and were more likely to be shared on Facebook than other campaigns in the study period.ConclusionsWeb-based crowdfunding appears to be a stopgap for only a minority of campaigners. The novelty of an emergency likely impacts both campaign initiation and crowdfunding success, as it reflects the affective response of a community. Crowdfunding activity likely serves as an early signal for emerging needs and societal sentiment for communities in acute distress that could be used by governments and aid organizations to guide disaster relief and policy.

Project description:BackgroundAccess to psychiatric care is critical for patients discharged from hospital psychiatric units to ensure continuity of care. When face-to-face follow-up is unavailable or undesirable, telepsychiatry becomes a promising alternative. This study aimed to investigate hospital- and county-level characteristics associated with telepsychiatry adoption.MethodsCross-sectional national data of 3475 acute care hospitals were derived from the 2017 American Hospital Association Annual Survey. Generalized linear regression models were used to identify characteristics associated with telepsychiatry adoption.ResultsAbout one-sixth (548 [15.8%]) of hospitals reported having telepsychiatry with a wide variation across states. Rural noncore hospitals were less likely to adopt telepsychiatry (8.3%) than hospitals in rural micropolitan (13.6%) and urban counties (19.4%). Hospitals with both outpatient and inpatient psychiatric care services (marginal difference [95% CI]: 16.0% [12.1% to 19.9%]) and hospitals only with outpatient psychiatric services (6.5% [3.7% to 9.4%]) were more likely to have telepsychiatry than hospitals with neither psychiatric services. Federal hospitals (48.9% [32.5 to 65.3%]), system-affiliated hospitals (3.9% [1.2% to 6.6%]), hospitals with larger bed size (Quartile IV vs. I: 6.2% [0.7% to 11.6%]), and hospitals with greater ratio of Medicaid inpatient days to total inpatient days (Quartile IV vs. I: 4.9% [0.3% to 9.4%]) were more likely to have telepsychiatry than their counterparts. Private non-profit hospitals (- 6.9% [- 11.7% to - 2.0%]) and hospitals in counties designated as whole mental health professional shortage areas (- 6.6% [- 12.7% to - 0.5%]) were less likely to have telepsychiatry.ConclusionsPrior to the Covid-19 pandemic, telepsychiatry adoption in US hospitals was low with substantial variations by urban and rural status and by state in 2017. This raises concerns about access to psychiatric services and continuity of care for patients discharged from hospitals.

Dataset Information

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

Publications

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

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