Dataset Information

Spatially exploring the intersection of socioeconomic status and Canadian cancer-related medical crowdfunding campaigns.

ABSTRACT:

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.

SUBMITTER: van Duynhoven A

PROVIDER: S-EPMC6596974 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

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: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:BackgroundThe rise of the internet and social media has boosted online crowdfunding as a novel strategy to raise funds for kick-starting projects, but it is rarely used in science.ObjectiveWe report on an online crowdfunding campaign launched in the context of the neuroscience project HORAO. The aim of HORAO was to develop a noninvasive real-time method to visualize neuronal fiber tracts during brain surgery in order to better delineate tumors and to identify crucial cerebral landmarks. The revenue from the crowdfunding campaign was to be used to sponsor a crowdsourcing campaign for the HORAO project.MethodsWe ran a 7-week reward-based crowdfunding campaign on a national crowdfunding platform, offering optional material and experiential rewards in return for a contribution toward raising our target of Swiss francs (CHF) 50,000 in financial support (roughly equivalent to US $50,000 at the time of the campaign). We used various owned media (websites and social media), as well as earned media (press releases and news articles) to raise awareness about our project.ResultsThe production of an explanatory video took 60 hours, and 31 posts were published on social media (Facebook, Instagram, and Twitter). The campaign raised a total of CHF 69,109. Approximately half of all donations came from donors who forwent a reward (CHF 28,786, 48.74%); the other half came from donors who chose experiential and material rewards in similar proportions (CHF 14,958, 25.33% and CHF 15,315.69, 25.93%, respectively). Of those with an identifiable relationship to the crowdfunding team, patients and their relatives contributed the largest sum (CHF 17,820, 30.17%), followed by friends and family (CHF 9288, 15.73%) and work colleagues (CHF 6028, 10.21%), while 43.89% of funds came from donors who were either anonymous or had an unknown relationship to the crowdfunding team. Patients and their relatives made the largest donations, with a median value of CHF 200 (IQR 90).ConclusionsCrowdfunding proved to be a successful strategy to fund a neuroscience project and to raise awareness of a specific clinical problem. Focusing on potential donors with a personal interest in the issue, such as patients and their relatives in our project, is likely to increase funding success. Compared with traditional grant applications, new skills are needed to explain medical challenges to the crowd through video messages and social media.

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:BACKGROUND:While the importance of medical students' demographic characteristics in influencing the scope and location of their future practice is recognized, these data are not systematically collected in Canada. This study aimed to characterize and compare the demographics of Canadian medical students with the Canadian population. METHODS:Through an online survey, delivered in 2018, medical students at 14 English-speaking Canadian medical schools provided their age, sex, gender identity, ethnicity, educational background, and rurality of the area they grew up in. Respondents also provided information on parental income, occupation, and education as markers of socioeconomic status. Data were compared to the 2016 Canadian Census. RESULTS:A total of 1388 students responded to the survey, representing a response rate of 16.6%. Most respondents identified as women (63.1%) and were born after 1989 (82.1%). Respondents were less likely, compared to the Canadian Census population, to identify as black (1.7% vs 6.4%) (P?<?0.001) or Aboriginal (3.5% vs. 7.4%) (P?<?0.001), and have grown up in a rural area (6.4% vs. 18.7%) (P?<?0.001). Respondents had higher socioeconomic status, indicated by parental education (29.0% of respondents' parents had a master's or doctoral degree, compared to 6.6% of Canadians aged 45-64), occupation (59.7% of respondents' parents were high-level managers or professionals, compared to 19.2% of Canadians aged 45-64), and income (62.9% of respondents grew up in households with income >$100,000/year, compared to 32.4% of Canadians). Assessment of non-response bias showed that our sample was representative of all students at English-speaking Canadian medical schools with respect to age, though a higher proportion of respondents were female. Additionally, there were no differences between early and late respondents with respect to ethnicity, rurality, and parental income, occupation, and education. CONCLUSIONS:Canadian medical students have different socioeconomic characteristics compared to the Canadian population. Collecting and analyzing these characteristics can inform evidence-based admissions policies.

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.