Medical Crowdfunding Research Articles

Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

Medical crowdfunding has raised many ethical concerns, among them that it may undermine privacy, widen health inequities, and commodify health care. One motivation for medical crowdfunding has received particular attention among ethicists. Recent studies have shown that many individuals are using crowdfunding to finance access to scientifically unsupported medical treatments. Recently, GoFundMe prohibited campaigns for antivaccination groups on the grounds that they "promote misinformation about vaccines" and for treatment at a German clinic offering unproven cancer treatments due to "the need to make sure people are equipped to make well-informed decisions." GoFundMe has not taken any additional actions to regulate the much larger presence of campaigns seeking to fund unproven medical interventions on the platform. In this article, we make the ethical case for intervention by GoFundMe and other crowdfunding platforms.

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

BackgroundThe 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.ResultsDrawing 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.ConclusionsRather 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.

“Kindhearted People, Please Save My Family”: Narrative Strategies for New Media Medical Crowdfunding

ABSTRACT With the development of new financing methods in the networked society, and due to the underdeveloped social security system in China, more and more patients and their families have to choose crowdfunding as an important way to raise treatment funds. Using thematic narrative analysis, this paper studied 100 texts of medical crowdfunding on Easy Fundraising from February 27, 2018 to May 1. It is found that the requests used a series of strategies including: constructing the identity of the patient in order to build a disadvantaged image worthy of help; using tragic narration based on the traditional Chinese cultural elements such as “family concept” and “filial piety” and contrast of the patients’ experience before and after the illness to mobilize the sympathy of potential donors; and downplaying the needs itself in order to maintain patients’ self-esteem.

Medical crowdfunding to access CAR T-cell therapy.

Medical crowdfunding to access CAR T-cell therapy.

Medical crowdfunding in China: empirics and ethics

Medical crowdfunding has become a popular choice worldwide for people with unaffordable health needs. In low-income and middle-income countries with limited social welfare arrangements and a high incidence of catastrophic...

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

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...

Ladies First, Gentlemen Third! The Effect of Narrative Perspective on Medical Crowdfunding

As medical crowdfunding becomes increasingly popular, many fundraising campaigns fail to collect enough donations for patients in need and therefore it is important to explore how to craft an effective fundraising campaign. In practice, a majority of fundraising campaigns are narrated from the third-person perspective without knowing whether narrating from the third-person perspective is the most effective approach or not. In this research, we draw upon multiple theories and propose that the relative effectiveness of the first- vs. third-person perspective depends on patient gender. To test the hypotheses, we conduct a randomized field experiment on a leading medical crowdfunding platform in China, involving more than 1.2 million potential donors. The empirical results show that the third-person perspective is more effective in motivating donation-related behaviors for male-patient fundraising campaigns, whereas the first-person perspective is more effective for female-patient fundraising campaigns. Furthermore, we find that the choice of the narrative perspectives matters more for potential donors who do not yet have many historical donations or have fewer friends with donations on the focal fundraising campaigns. The findings generate important theoretical and managerial implications for medical crowdfunding.

Media portrayal of illness-related medical crowdfunding: A content analysis of newspaper articles in the United States and Canada.

BackgroundMedical 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.MethodsA 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.ResultsArticles 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.ConclusionsCrowdfunding 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.

‘Bye-bye boobies’: normativity, deservingness and medicalisation in transgender medical crowdfunding

Transgender individuals experience multiple barriers to accessing care related to medical transition, including a shortage of providers as well as health insurance programmes that categorically exclude the provision of gender-affirming hormones and surgery. Like people seeking financial support for health care related to illness or injury, many transgender people utilise web-based crowdfunding to help pay for medical transition costs. Although a growing body of research finds that medical crowdfunding individualises the effects of health inequalities, little of this research has focused specifically on trans crowdfunding. A dataset of 410 crowdfunding campaigns for medical transition was created. The majority of online campaigns were used to fund chest surgeries among young, white, binary-identified trans men in the USA. On average, campaigns raise only about 25% of their fundraising goal. Using thematic narrative analysis, I find that campaign narratives exhibit several main themes: trans 101, biological essentialism, insurance access, deservingness, normative transition and notions of progress. These themes illustrate how transgender medical crowdfunding is a response to inequalities but also has the effect of reproducing them.

“We don’t want him worrying about how he will pay to save his life”: Using medical crowdfunding to explore lived experiences with addiction services in Canada

Background: The opiate crisis in Canada, among other causes, has led to increased demand and wait times for addiction-related services. One response to this situation has been for Canadians to seek crowdfunding support for services outside of the public system. However, little is known about how large this practice is, what addiction-related services Canadians seek, and what the implications of this practice are.Methods: We searched the crowdfunding platforms GoFundMe and YouCaring using keywords related to addiction. This search identified 129 crowdfunding campaigns by Canadian residents seeking addiction-related services. The authors recorded information from the campaigns and conducted a thematic analysis of their narrative content.Results: These campaigns requested $12,722,527 and were pledged $204,848 (1.6%). Thematic analysis revealed four core elements discussed in the pursuit of addiction-related crowdfunding: 1) affording treatment, including at private and/or perceived higher quality facilities; 2) surviving treatment by seeking living expenses during and before treatment; 3) life after treatment by addressing needs following receiving treatment for addiction; and 4) publicizing treatment where recipients often struggled with the need to reveal personal details as part of their campaigns.Conclusion: These findings confirm discussion in the academic and policy literature on Canadians seeking addiction-related services that wait times for public services are a significant issue for many. However, these findings also show that the costs of living expenses before and during treatment, as well as restarting lives following treatment, also create struggles for Canadians. These findings confirm and expand concerns in the literature on medical crowdfunding, where this practice is thought to raise issues around the equitable distribution of resources and the loss of personal privacy. While crowdfunding for addictionrelated services has helped some Canadians, the money raised was vastly less than that requested, came at a cost to personal privacy, and raises equity issues.

Investigating the Relationship Between Medical Crowdfunding and Personal Bankruptcy in the United States: Evidence of a Digital Divide

As of 2007, an estimated 62% of individual bankruptcy filings in the United States were a direct result of costs borne from medical treatment following illness or injury, up from 46% in 2001. This pressing issue is only getting worse and is in need of relief. In this work, we consider the potential of a relatively recent, and rapidly growing, phenomenon to mitigate the problem: online crowdfunding for medical expenses, wherein patients reach out to their social network for monetary support via online platforms that facilitate the process. On the surface, medical crowdfunding holds the potential to address insurance gaps and to help those burdened by medical debt. However, recent questions have arisen in the healthcare literature around fairness and equity in the distribution of funds. Consistent with the notion of digital divide, many have raised concerns that the individuals most likely to benefit from these services are not the individuals who are most in need. Accordingly, we first seek to establish the effect of this novel phenomenon on a key indicator of financial distress: rates of personal bankruptcy. We then explore heterogeneity in patterns of funding solicitation and acquisition, to assess the presence inequalities across patient populations. We leverage proprietary data from a large medical crowdfunding platform based in the United States, which we combine with county records of personal bankruptcy filings. We report evidence that greater success amongst medical crowdfunding campaigns does translate into a reduction in personal bankruptcy filings. Subsequently, we report analyses which revealed evidence consistent with the presence of a digital divide. Specifically, we report evidence that disadvantaged groups are systematically more likely to launch medical crowdfunding campaigns, yet conditional on campaign launch, garner systematically less in funding. We discuss the implications for the literature on the digital divide, as well as implications for practice and policy.

Fraud in Medical Crowdfunding: A Typology of Publicized Cases and Policy Recommendations

Medical crowdfunding is an increasingly popular means of leveraging social networks to raise money for health‐related expenses. While providing crucial access to care for many, it is also accompanied by increased risks of fraudulent activity. While many such cases of fraud have been publicized by the news media, and research articles mention the potential for increased risk of fraud, little is known about the types of fraud that occur within medical crowdfunding. This article develops of a typology of fraud cases described in the news media by retrieving 52 cases of medical crowdfunding fraud through a search of news media and an online aggregator of crowdfunding fraud. We identified the following categories of fraud: faking/exaggerating one's own illness (n = 29), faking/exaggerating another's illness (n = 7), impersonation (n = 8), and misapplication of funds (n = 8). Building on these findings, we identify several limitations to existing anti fraud policies, and offer five policy recommendations to identify instances of medical crowdfunding fraud, prevent such fraud, and offer better outcomes to its victims.

Medical Crowdfunding for Scientifically Unsupported or Potentially Dangerous Treatments

This study identified fundraising campaigns for unsubstantiated treatments, such as homeopathic remedies for cancer and antibiotic therapy for chronic Lyme disease, on GoFundMe and other crowdfunding platforms.

Medical crowdfunding and the virtuous donor

Patients and families are increasingly turning to crowdfunding to help them cover the cost of medical care. The ethics of crowdfunding has garnered some attention in the bioethical literature. In this paper I examine an ethical aspect of medical crowdfunding (MCF) that has received limited attention: the role of donors. I defend a virtue ethical approach to analyzing the role of donors in MCF. Vicious donation, where donors do not exercise the relevant virtues, can compound some of the ethical risks associated with MCF, as seen in the several recent, high-profile cases. My primary contention in this paper is that encouraging donors to think about how donating to a particular campaign would measure against the virtues I outline could help to discourage acts of ethically problematic donation to MCF campaigns.

Medical crowdfunding for organ transplantation.

An increasing number of patients and families are utilizing online crowdfunding to support their medical expenses related to organ transplantation. The factors influencing the success of crowdfunding campaigns are poorly understood. Crowdfunding campaigns were abstracted from a popular crowdfunding web site. Campaigns were included if they were actively accepting donations to fund medical expenses related to transplantation of selected organs. The primary outcome measure was total amount raised among successful campaigns receiving at least one donation. Bivariate and multivariate analyses were performed on various campaign characteristics. A total of 850 campaigns were analyzed. Kidney transplant campaigns were most common (40.5%), followed by liver (33.3%), lung (12.2%), heart (11.3%), and multiorgan (2.7%). 69.1% of campaigns received any donation, and among these, the mean amount raised was $3664 (median $1175). The following factors were significantly associated with amount raised: more positive emotional sentiment in the campaign description (+2.6% per AFINN unit, P<.001), longer campaign description length (+2.4% per 100 characters, P=.001), higher goal amount (+0.6% per $1000 of goal amount, P=.004), and third-person description perspective (+131% vs first person, P<.001). Physicians will likely encounter medical crowdfunding with increasing frequency as it continues to grow in popularity among their patients.

Ethical implications of medical crowdfunding: the case of Charlie Gard

Patients are increasingly turning to medical crowdfunding as a way to cover their healthcare costs. In the case of Charlie Gard, an infant born with encephalomyopathic mitochondrial DNA depletion syndrome,...

Crowdfunding in healthcare

Medical crowdfunding is the practice of using websites to raise money from donors to pay for medicalcare or related expenses. While in terms of overall funding volume, medical crowdfunding should still be considered as a niche phenomenon, it is rapidly growing in many countries and is seen by many people as a way to cope with government cuts on public health financing. Examining the worldwide population of healthcare crowdfunding platforms, this study is the first to offer global and cross-platform evidence on healthcare crowdfunding by providing an assessment of how and where healthcare crowdfunding platforms emerge. We explore the relationship between healthcare crowdfunding and national health systems, finding evidence of a substitution effect when public health coverage is low. Moreover, our findings support the evidence that the number of successfully funded health projects is higher when the platform is not investment-based or dedicated only to healthcare projects.

Engaging a Community for Rare Genetic Disease: Best Practices and Education From Individual Crowdfunding Campaigns.

BackgroundGenetic 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).ObjectiveAmplify 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.MethodsThe 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.ResultsOf 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.ConclusionsWe 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.

Crowdfunding in Healthcare

Medical crowdfunding is the practice of using websites to raise money from donors to pay for medical care or related expenses. While in terms of overall funding volume, medical crowdfunding should still be considered as a niche phenomenon, it is rapidly growing in many countries and is seen by many people as a way to cope with government cuts on public health financing. Examining the worldwide population of healthcare crowdfunding platforms, this study is the first to offer global and cross-platform evidence on healthcare crowdfunding by providing an assessment of how and where healthcare crowdfunding platforms emerge. We explore the relationship between healthcare crowdfunding and national health systems, finding evidence of a substitution effect when public health coverage is low. Moreover, our findings support the evidence that the number of successfully funded health projects is higher when the platform is not investment-based or dedicated only to healthcare projects.

Medical Crowdfunding for Patients Undergoing Orthopedic Surgery.

Crowdfunding for medical expenses is growing in popularity. Through several websites, patients create public campaign profiles to which donors can contribute. Research on medical crowdfunding is limited, and there have been no studies of crowdfunding in orthopedics. Active medical crowdfunding campaigns for orthopedic trauma, total joint arthroplasty, and spine surgery were queried from a crowdfunding website. The characteristics and outcomes of crowdfunding campaigns were abstracted and analyzed. For this study, 444 campaigns were analyzed, raising a total of $1,443,528. Among the campaigns that received a donation, mean amount raised was $4414 (SE, $611). Multivariate analysis showed that campaigns with unspecified location (odds ratio, 0.26; P=.0008 vs West) and those for total joint arthroplasty (odds ratio, 0.35; P=.0003 vs trauma) had significantly lower odds of receipt of any donation. Description length was associated with higher odds of donation receipt (odds ratio, 1.13 per +100 characters; P<.0001). Among campaigns that received any donation, those with Southern location (-65.5%, P<.0001), international location (-68.5%, P=.0028), and unspecified location (-63.5%, P=.0039) raised lower amounts compared with campaigns in the West. Goal amount was associated with higher amount raised (+3.2% per +$1000, P<.0001). Resources obtained through crowdfunding may be disproportionately available to patients with specific diagnoses, those from specific regions, those who are able to craft a lengthy descriptive narrative, and those with access to robust digital social networks. Clinicians are likely to see a greater proportion of patients turning to crowdfunding as it grows in popularity. Patients may ask physicians for information about crowdfunding or request testimonials to support campaigns. Surgeons should consider their response to such requests individually. These findings shed light on the dynamics of medical crowdfunding and support robust personal and professional deliberation. [Orthopedics. 2018; 41(1):e58-e63.].