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.

Unmet financial needs among patients crowdfunding to support gynecologic cancer care.

BACKGROUND: Patients may use crowdfunding to solicit donations, typically from multiple small donors using internet-based means, to offset the financial toxicity of cancer care. OBJECTIVE: To describe crowdfunding campaigns by gynecologic cancer patients and to compare campaign characteristics and needs expressed between patients with cervical, uterine, and ovarian cancer. STUDY DESIGN: We queried the public crowdfunding forum GoFundMe.com for "cervical cancer," "uterine cancer," and "ovarian cancer." The first 200 consecutive posts for each cancer type fundraising within the United States were analyzed. Data on campaign goals and needs expressed were manually extracted. Descriptive statistics and bivariate analyses were performed. RESULTS: Among the 600 fundraising pages, the median campaign goal was $10,000 [IQR $5000-$23,000]. Campaigns raised a median of 28.6% of their goal with only 8.7% of campaigns reaching their goal after a median of 54 days online. On average, ovarian cancer campaigns had higher monetary goals, more donors, and larger donation amounts than cervical cancer campaigns and raised more money than both cervical and uterine cancer campaigns. Campaigns were fundraising to support medical costs (80-85%) followed by lost wages (36-56%) or living expenses (27-41%). Cervical cancer campaigns reported need for non-medical costs more frequently than uterine or ovarian cancer campaigns. States without Medicaid expansions (31% of the national population) were over-represented among cervical cancer and uterine cancer, but not ovarian cancer campaigns. CONCLUSIONS: Crowdfunding pages reveal patients fundraising for out-of-pocket costs in the thousands of dollars and a wide range of unmet financial needs based on cancer type.

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.

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.

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 Thyroid Surgery: Who, What, Where, and How Much?

BACKGROUND: Crowdfunding has become a unique response to the challenge of health care expenses, yet it has been rarely studied by the medical community. We looked to describe the scope of crowdfunding in thyroid surgery and analyze the factors that contribute toward a successful campaign. METHODS: In November 2018, active campaigns were retrieved from a popular crowdfunding Web site using search terms thyroidectomy and thyroid surgery and filtered to include only campaigns that originated in the United States. RESULTS: About 1052 thyroid surgery-related campaigns were analyzed. About 836 (79.5%) involved female patients and 43 (4.1%) pediatric patients. About 792 campaigns (75.3%) referred to thyroid cancer as a primary condition, 163 (15.5%) benign thyroid disease, and 97 (9.2%) other conditions. The average amount raised per campaign was $2514.54 (range, $0-$53,160). About 338 (32.1%) campaigns were self-posted, 317 (30.1%) posted by family, and 397 (37.7%) posted by friends. Median campaign duration was 20 mo, with a median number of 16 donors, 17 hearts, and 136 social media shares. Campaigns related to thyroid cancer raised more funds ($2729.97) than benign ($1669.84) or other ($2175.03) conditions (P < 0.001). Campaigns submitted by friends ($3524.78) received more funding than those by self ($1672.48) or family ($2147.19) (P < 0.001). Campaign duration, donor number, share number, and hearts were also significant predictors of amount raised. CONCLUSIONS: For thyroid surgery-related crowdfunding, campaigns referring to thyroid cancer had the highest amount of funds raised. Campaigns created by friends and other factors related to increased community engagement such as social media shares were also related to increased funds.

What Medical Crowdfunding Campaigns Can Tell Us About Local Health System Gaps and Deficiencies: Exploratory Analysis of British Columbia, Canada.

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.

A Guide to Scientific Crowdfunding.

Crowdfunding represents an attractive new option for funding research projects, especially for students and early-career scientists or in the absence of governmental aid in some countries. The number of successful science-related crowdfunding campaigns is growing, which demonstrates the public's willingness to support and participate in scientific projects. Putting together a crowdfunding campaign is not trivial, however, so here is a guide to help you make yours a success.

When Brain Beats Behavior: Neuroforecasting Crowdfunding Outcomes.

Although traditional economic and psychological theories imply that individual choice best scales to aggregate choice, primary components of choice reflected in neural activity may support even more generalizable forecasts. Crowdfunding represents a significant and growing platform for funding new and unique projects, causes, and products. To test whether neural activity could forecast market-level crowdfunding outcomes weeks later, 30 human subjects (14 female) decided whether to fund proposed projects described on an Internet crowdfunding website while undergoing scanning with functional magnetic resonance imaging. Although activity in both the nucleus accumbens (NAcc) and medial prefrontal cortex predicted individual choices to fund on a trial-to-trial basis in the neuroimaging sample, only NAcc activity generalized to forecast market funding outcomes weeks later on the Internet. Behavioral measures from the neuroimaging sample, however, did not forecast market funding outcomes. This pattern of associations was replicated in a second study. These findings demonstrate that a subset of the neural predictors of individual choice can generalize to forecast market-level crowdfunding outcomes-even better than choice itself.SIGNIFICANCE STATEMENT Forecasting aggregate behavior with individual neural data has proven elusive; even when successful, neural forecasts have not historically supplanted behavioral forecasts. In the current research, we find that neural responses can forecast market-level choice and outperform behavioral measures in a novel Internet crowdfunding context. Targeted as well as model-free analyses convergently indicated that nucleus accumbens activity can support aggregate forecasts. Beyond providing initial evidence for neuropsychological processes implicated in crowdfunding choices, these findings highlight the ability of neural features to forecast aggregate choice, which could inform applications relevant to business and policy.

Citizens unite for computational immunology!

Recruiting volunteers who can provide computational time, programming expertise, or puzzle-solving talent has emerged as a powerful tool for biomedical research. Recent projects demonstrate the potential for such 'crowdsourcing' efforts in immunology. Tools for developing applications, new funding opportunities, and an eager public make crowdsourcing a serious option for creative solutions for computationally-challenging problems. Expanded uses of crowdsourcing in immunology will allow for more efficient large-scale data collection and analysis. It will also involve, inspire, educate, and engage the public in a variety of meaningful ways. The benefits are real - it is time to jump in!

Crowdsourcing Trauma: Psychopathology in a Trauma-Exposed Sample Recruited via Mechanical Turk.

Although crowdsourcing websites like Amazon's Mechanical Turk (MTurk) allow researchers to conduct research efficiently, it is unclear if MTurk and traditionally recruited samples are comparable when assessing the sequela of traumatic events. We compared the responses to validated self-report measures of posttraumatic stress disorder (PTSD) and related constructs that were given by 822 participants recruited via MTurk and had experienced a DSM-5 Criterion A traumatic event to responses obtained in recent samples of participants recruited via traditional methods. Results suggested that the rate of PTSD in the present sample (19.8%) was statistically higher than that found in a recent systematic review of studies that used only traditional recruitment methods. The severity of PTSD reported in the MTurk sample was significantly greater than that reported in a college sample, d = 0.24, and significantly less than that reported in a veteran sample, d = 0.90. The factor structure of PTSD found in the MTurk sample was consistent with prevailing models of PTSD. Findings indicate that crowdsourcing may improve access to this hard-to-reach population.

Field experiments of success-breeds-success dynamics.

Seemingly similar individuals often experience drastically different success trajectories, with some repeatedly failing and others consistently succeeding. One explanation is preexisting variability along unobserved fitness dimensions that is revealed gradually through differential achievement. Alternatively, positive feedback operating on arbitrary initial advantages may increasingly set apart winners from losers, producing runaway inequality. To identify social feedback in human reward systems, we conducted randomized experiments by intervening in live social environments across the domains of funding, status, endorsement, and reputation. In each system we consistently found that early success bestowed upon arbitrarily selected recipients produced significant improvements in subsequent rates of success compared with the control group of nonrecipients. However, success exhibited decreasing marginal returns, with larger initial advantages failing to produce much further differentiation. These findings suggest a lesser degree of vulnerability of reward systems to incidental or fabricated advantages and a more modest role for cumulative advantage in the explanation of social inequality than previously thought.

Crowdsourcing HIV Test Promotion Videos: A Noninferiority Randomized Controlled Trial in China.

BACKGROUND: Crowdsourcing, the process of shifting individual tasks to a large group, may enhance human immunodeficiency virus (HIV) testing interventions. We conducted a noninferiority, randomized controlled trial to compare first-time HIV testing rates among men who have sex with men (MSM) and transgender individuals who received a crowdsourced or a health marketing HIV test promotion video. METHODS: Seven hundred twenty-one MSM and transgender participants (≥16 years old, never before tested for HIV) were recruited through 3 Chinese MSM Web portals and randomly assigned to 1 of 2 videos. The crowdsourced video was developed using an open contest and formal transparent judging while the evidence-based health marketing video was designed by experts. Study objectives were to measure HIV test uptake within 3 weeks of watching either HIV test promotion video and cost per new HIV test and diagnosis. RESULTS: Overall, 624 of 721 (87%) participants from 31 provinces in 217 Chinese cities completed the study. HIV test uptake was similar between the crowdsourced arm (37% [114/307]) and the health marketing arm (35% [111/317]). The estimated difference between the interventions was 2.1% (95% confidence interval, -5.4% to 9.7%). Among those tested, 31% (69/225) reported a new HIV diagnosis. The crowdsourced intervention cost substantially less than the health marketing intervention per first-time HIV test (US$131 vs US$238 per person) and per new HIV diagnosis (US$415 vs US$799 per person). CONCLUSIONS: Our nationwide study demonstrates that crowdsourcing may be an effective tool for improving HIV testing messaging campaigns and could increase community engagement in health campaigns. CLINICAL TRIALS REGISTRATION: NCT02248558.