The Wallet Biopsy: Medical Crowdfunding for Heart Transplantation.

Financial considerations continue to impact access to heart transplantation. Transplant recipients face various costs, including, but not limited to, the index hospitalization, immunosuppressive medications, and lodging and travel to appointments. In this study, we sought to describe the state of crowdfunding for individuals being evaluated for heart transplantation. Using the search term heart transplant, 1000 GoFundMe campaigns were reviewed. After exclusions, 634 (63.4%) campaigns were included. Most campaigns were in support of white individuals (57.8%), males (63.1%) and adults (76.7%). Approximately 15% of campaigns had not raised any funds. The remaining campaigns fundraised a median of $53.24 dollars per day. Of the patients, 44% were admitted at the time of the fundraising. Within the campaigns in the United States, the greatest proportions were in the Southeast United States in non-Medicaid expansion states. These findings highlight the significant financial toxicities associated with heart transplantation and the need for advocacy at the governmental and payer levels to improve equitable access and coverage for all.

Racial and gender disparities among highly successful medical crowdfunding campaigns.

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.

Is Equity Crowdfunding the Leapfrog to Companies' Success? Financial Performance in China.

As the fastest-growing crowdfunding model, equity crowdfunding (ECF) brings high returns and uncertainty. In this context, it is crucial to understand these crowdfunding projects' actual performance. Since ECF is currently in the early stage of integration, there are still a lot of risk issues, such as the uncertainty of equity structure, capital supervision, or project management. Therefore, this paper develops a new profitability indicator, "return on registered capital," to test its impact on the ECF project's actual return. This paper studies which factors affect the financial performance of ECF projects through the traditional statistical model and a deep neural network (DNN) model. There is evidence that return on registered capital affects the actual return of the project. At the same time, the company's operating time and the number of employees had an unexpected effect on project performance. In addition, the recognition accuracy of the DNN model in this study exceeds 97%, which affirms the applicability of the DNN model in the analysis of ECF success factors. This paper also uses tenfold cross-validation to prove that deep learning has certain advantages in this topic's accuracy and generalization error. This study explores whether company representatives' gender and knowledge level affect project performance. The results will be described in detail in the paper.

Unmet financial burden of infertility care and the impact of state insurance mandates in the United States: analysis from a popular crowdfunding platform.

OBJECTIVE: To examine infertility-related fund-raising campaigns on a popular crowdfunding website and to compare campaign characteristics across states with and without legislative mandates for insurance coverage for infertility-related care. DESIGN: Retrospective cohort study. SETTING: Online crowdfunding platform (GoFundMe) between 2010 and 2020. PATIENT(S): GoFundMe campaigns in the United States containing the keywords "fertility" and "infertility." INTERVENTION(S): State insurance mandates for infertility treatment coverage. MAIN OUTCOME MEASURE(S): Primary outcomes included fund-raising goals, funds raised, campaign location, and campaigns per capita. RESULT(S): Of the 3,332 infertility-related campaigns analyzed, a total goal of $52.6 million was requested, with $22.5 million (42.8%) successfully raised. The average goal was $18,639 (standard deviation [SD] $32,904), and the average amount raised was $6,759 (SD $14,270). States with insurance mandates for infertility coverage had fewer crowdfunding campaigns per capita (0.75 vs. 1.15 campaigns per 100,000 population than states without insurance mandates. CONCLUSION(S): We found a large number of campaigns requesting financial assistance for costs associated with infertility care, indicating a substantial unmet financial burden. States with insurance mandates had fewer campaigns per capita, suggesting that mandates are effective in mitigating this financial burden. These data can inform future health policy legislation on the state and federal levels to assist with the financial burden of infertility.

The Use of Crowdfunding to Support Radiation Therapy Cancer Treatments.

BACKGROUND/AIM: The purpose of this study was to assess patients' use of a crowdfunding platform to raise funds for radiation treatment and to better understand the direct and indirect costs associated with treatments. MATERIALS AND METHODS: The GoFundMe crowdfunding database was queried for four unique categories related to radiation treatment campaigns. Covariates identified included clinical and demographic variables, and associations between amount raised and these predictors were analyzed using a generalized linear model. RESULTS: While 56% percent of campaigns cited direct costs associated with treatment, 73.4% of campaigns cited indirect costs related to treatment. Indirect expenses related to travel (31.7%) as well as living expenses (29.2%) were cited most often across all four treatment categories. CONCLUSION: This study enhances understanding regarding patients use of crowdfunding for radiation treatment. Increased focus should be placed on discussing the indirect costs of care with patients and their families.

The promise of crowdfunding to finance R&D of novel diagnostics and therapeutics for incurable diseases.

The level of funding available for research and development (R&D) of diagnostics (D) and therapeutics (T) for incurable diseases varies and is not associated with the extent of their disease burden. Crowdfunding is a promising way to increase funding for R&D of D&T for underfunded incurable diseases, such as Alzheimer's and Parkinson's disease, which has not been exploited to its full capacity. Investing into efforts to educate patients and researchers about its prospective is a worthwhile endeavor, which could lead to the generation of substantial new capital to finance the development of novel therapeutics for these diseases.

Understanding the nature and dimensions of litigation crowdfunding: A visual analytics approach.

The escalating cost of civil litigation is leaving many defendants and plaintiffs unable to meet legal expenses such as attorney fees, court charges and others. This significantly impacts their ability to sue or defend themselves effectively. Related to this phenomenon is the ethics discussion around access to justice and crowdfunding. This article explores the dimensions that explain the phenomenon of litigation crowdfunding. Using data from CrowdJustice, a popular Internet fundraising platform used to assist in turning legal cases into publicly funded social cases, we study litigation crowdfunding through the lenses of the number of pledges, goal achievement, target amount, length of description, country, case category, and others. Overall, we see a higher number of cases seeking funding in the categories of human rights, environment, and judicial review. Meanwhile, the platform offers access to funding for other less prominent categories, such as voting rights, personal injury, intellectual property, and data & privacy. At the same time, donors are willing to donate more to cases related to health, politics, and public services. Also noteworthy is that while donors are willing to donate to education, animal welfare, data & privacy, and inquest-related cases, they are not willing to donate large sums to these causes. In terms of lawyer/law firm status, donors are more willing to donate to cases assisted by experienced lawyers. Furthermore, we also note that the higher the number of successful cases an attorney presents, the greater the amount raised. We analyzed valence, arousal, and dominance in case description and found they have a positive relationship with funds raised. Also, when a case description is updated on a crowdsourcing site, it ends up being more successful in funding-at least in the categories of health, immigration, and judicial review. This is not the case, however, for categories such as public service, human rights, and environment. Our research addresses whether litigation crowdfunding, in particular, levels the playing field in terms of opening up financing opportunities for those individuals who cannot afford the costs of litigation. While it may support social justice, ethical concerns with regards to the kinds of campaigns must also be addressed. Most of the ethical concerns center around issues relating to both the fundraisers and donors. Our findings have ethical and social justice implications for crowdfunding platform design.

Crowdsourcing to measure financial toxicity in gynecologic oncology.

OBJECTIVE: To utilize a novel crowdsourcing method to measure financial toxicity and its effects among a national cohort of gynecologic cancer patients. METHODS: Crowdsourcing methods were used to administer an online survey to women in the United States with gynecologic cancers. We used the Comprehensive Score for Financial Toxicity (COST) tool to measure financial toxicity and the EQ-5D-3L to measure quality of life (QOL). Based on prior work, we defined high financial toxicity as a COST score ≤ 23. We assessed correlation of COST scores with QOL. We used log-binomial regression to examine associations between high financial toxicity and cost-coping strategies. RESULTS: Among the final study sample of 334 respondents, 87% were white, median age at diagnosis was 55 (interquartile range 47-63), 52% had stage III or IV disease and 90% had private insurance or Medicare. Median COST score was 24 (interquartile range 15-32) and 49% of respondents reported high financial toxicity. Greater financial toxicity was correlated with worse QOL (p < 0.001). Participants reporting high financial toxicity were more likely to use cost-coping strategies, including spending less on basic goods (RR: 3.3; 95% CI: 2.1-5.1), borrowing money or applying for financial assistance (RR: 4.0; 95% CI: 2.4-6.9), and delaying or avoiding care (RR: 5.6; 95% CI: 2.6-12.1). CONCLUSIONS: Crowdsourcing is an effective tool to measure financial toxicity. Nearly half of respondents reported high financial toxicity, which was significantly associated with worse QOL, utilization of cost-coping strategies and delays or avoidance of care.

Early Crowdfunding Response to the COVID-19 Pandemic: Cross-sectional Study.

BACKGROUND: As 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. OBJECTIVE: We 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. METHODS: On 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. RESULTS: We 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. CONCLUSIONS: Web-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.

Crowdfunding Campaigns and COVID-19 Misinformation.

Objectives. To understand whether and how crowdfunding campaigns are a source of COVID-19-related misinformation.Methods. We searched the GoFundMe crowdfunding platform using 172 terms associated with medical misinformation about COVID-19 prophylaxes and treatments. We screened resulting campaigns for those making statements about the ability of these searched-for or related terms to prevent or treat COVID-19.Results. There were 208 campaigns worldwide that requested $21 475 568, raised $324 305 from 4367 donors, and were shared 24 158 times. The most discussed interventions were dietary supplements and purported immune system boosters (n = 231), followed by other forms of complementary and alternative medicine (n = 24), and unproven medical interventions (n = 15). Most (82.2%) of the campaigns made definitive efficacy claims.Conclusions. Campaigners focused their efforts on dietary supplements and immune system boosters. Campaigns for purported COVID-19 treatments are particularly concerning, but purported prophylaxes could also distract from known effective preventative approaches. GoFundMe should join other online and social media platforms to actively restrict campaigns that spread misinformation about COVID-19 or seek to better inform campaigners about evidence-based prophylaxes and treatments.

Do truth-telling oaths improve honesty in crowd-working?

This study explores whether an oath to honesty can reduce both shirking and lying among crowd-sourced internet workers. Using a classic coin-flip experiment, we first confirm that a substantial majority of Mechanical Turk workers both shirk and lie when reporting the number of heads flipped. We then demonstrate that lying can be reduced by first asking each worker to swear voluntarily on his or her honor to tell the truth in subsequent economic decisions. Even in this online, purely anonymous environment, the oath significantly reduced the percent of subjects telling "big" lies (by roughly 27%), but did not affect shirking. We also explore whether a truth-telling oath can be used as a screening device if implemented after decisions have been made. Conditional on flipping response, MTurk shirkers and workers who lied were significantly less likely to agree to an ex-post honesty oath. Our results suggest oaths may help elicit more truthful behavior, even in online crowd-sourced environments.

Pay for performance, satisfaction and retention in longitudinal crowdsourced research.

In the social and cognitive sciences, crowdsourcing provides up to half of all research participants. Despite this popularity, researchers typically do not conceptualize participants accurately, as gig-economy worker-participants. Applying theories of employee motivation and the psychological contract between employees and employers, we hypothesized that pay and pay raises would drive worker-participant satisfaction, performance, and retention in a longitudinal study. In an experiment hiring 359 Amazon Mechanical Turk Workers, we found that initial pay, relative increase of pay over time, and overall pay did not have substantial influence on subsequent performance. However, pay significantly predicted participants' perceived choice, justice perceptions, and attrition. Given this, we conclude that worker-participants are particularly vulnerable to exploitation, having relatively low power to negotiate pay. Results of this study suggest that researchers wishing to crowdsource research participants using MTurk might not face practical dangers such as decreased performance as a result of lower pay, but they must recognize an ethical obligation to treat Workers fairly.

Crowdfunding for complementary and alternative medicine: What are cancer patients seeking?

BACKGROUND: Complementary and alternative medicine (CAM) is increasingly being integrated into conventional medical care for cancer, used to counter the side effects of conventional cancer treatment, and offered as an alternative to conventional cancer care. Our aim is to gain a broader understanding of trends in CAM interventions for cancer and crowdfunding campaigns for these interventions. METHODS: GoFundMe campaigns fundraising for CAM were retrieved through a database of crowdfunding campaign data. Search terms were drawn from two National Institutes of Health lists of CAM cancer interventions and a previous study. Campaigns were excluded that did not match these or related search terms or were initiated outside of June 4th, 2018 to June 4th, 2019. RESULTS: 1,396 campaigns were identified from the US (n = 1,037, 73.9%), Canada (n = 165, 11.8%), and the UK (n = 107, 7.7%). Most common cancer types were breast (n = 344, 24.6%), colorectal (n = 131, 9.4%), and brain (n = 98, 7.0%). CAM interventions sought included supplements (n = 422, 30.2%), better nutrition (n = 293, 21.0%), high dose vitamin C (n = 276, 19.8%), naturopathy (n = 226, 16.2%), and cannabis products (n = 211, 15.1%). Mexico (n = 198, 41.9%), and the US (n = 169, 35.7%) were the most common treatment destinations. CONCLUSIONS: These findings confirm active and ongoing interest in using crowdfunding platforms to finance CAM cancer interventions. They confirm previous findings that CAM users with cancer tend to have late stage cancers, cancers with high mortality rates, and specific diseases such as breast cancer. These findings can inform targeted responses where facilities engage in misleading marketing practices and the efficacy of interventions is unproven.

Backers investment behavior on explicit and implicit factors in reward-based crowdfunding based on ELM theory.

The aim of this study is to identify the dynamic explicit and implicit information factors which displayed on the webpage of platforms that influence backers' investment decision-making behavior. We analyze the connections among these factors by collecting the longitudinal dataset from reward-based crowdfunding platform. Based on ELM model, we establish Fixed Estimation Panel Data Model respectively according to explicit and implicit factors and take Funding Status (crowdfunding results) as the moderating variable to observe the goal gradient effect. Results indicate that most variables in the central route affect backers' investment behavior positively, while most variables in the periphery route have a negative impact on backers' investment behavior. The Funding Status has a significant negative moderating effect on the explicit variables, and has no significant moderating effect on the implicit information variables of the project. In addition, we upgrade the econometric method used by previous scholars, which could improve the accuracy of the FE model. Furthermore, we find strong support for the herding effect in reward-based crowdfunding and the intensity tends to decrease before the funding goal draws near.

Reflections on Charlie Gard and the Best Interests Standard From Both Sides of the Atlantic Ocean.

Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised £1.3 million (∼$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States.

[Participant-funded clinical trials on rare diseases]. / Ensayos clínicos en enfermedades raras financiados por los participantes.

The development of medicines for certain rare diseases can be frustrated by lack of funding. In certain cases the patients themselves, or their relatives, occasionally fund the clinical trial in which they will be treated with the investigational medicine. There are 3models of self-funded research: 2of them, "pay to try" and "pay to participate", have already been put into practice. The third, the "plutocratic" proposal, which has been recently put forward is still a theoretical model. In this work the scientific, social and ethical benefits and risks of the 2clinical research models, "pay to participate" and the "plutocratic" proposal, are reviewed. Patient-funded clinical trials are frequently performed through crowdfunding. The most controversial aspects of this funding modality are also addressed in this article from several perspectives. Finally, a future scenario that would allow the launching of self-funded clinical trials in Spain by the "plutocratic" proposal is proposed.