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The Rise of Crowdfunding for Medical Care: Promises and Perils

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Abstract

Crowdfunding is a financing method characterized by pooling together a large number of smaller contributions to support a specific initiative. The emergence of social media and numerous online platforms has allowed crowdfunding to flourish in popularity. Crowdfunding is an especially effective and popular tool in the realm of supporting charitable or ideological causes. Increasingly prevalent in this realm is crowdfunding for health care costs.

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... In healthcare, crowdfunding is used for fundraising to meet different needs ranging from medical care through to biomedical research. This also includes access to an experimental treatment that is not evidence-based, raising medico-legal concerns [1][2][3]6]. The benefits of crowdfunding campaigns range from facilitating access to care, debt avoidance, and allowing family members to spend more time with sick loved ones [2]. ...
... The benefits of crowdfunding campaigns range from facilitating access to care, debt avoidance, and allowing family members to spend more time with sick loved ones [2]. Notably, some patients resort to crowdfunding for direct health care expenses because of shortfalls in medical insurance cover; inadequate public health funding and desperation caused by financial strain from life-threatening medical conditions [ [2,6]].The drive for crowdfunding may be compounded by system failures resulting in barriers to accessing care and limited availability of services, to name a few. Medical crowdfunding is a symptom of a problem, rather than a solution. ...
... Undoubtedly, social media's popularity has facilitated the visibility and flourishing of crowdfunding platforms. These campaigns have different outcomes, and the most successful one is GoFundMe's fundraising of $2 million for a young girl suffering from a rare neurological disorder [6]. ...
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Background: Social media has globalised compassion enabling requests for donations to spread beyond geographical boundaries. The use of social media for medical crowdfunding links people with unmet healthcare needs to charitable donors. There is no doubt that fundraising campaigns using such platforms facilitates access to financial resources to the benefit of patients and their caregivers. Main text: This paper reports on a critical review of the published literature and information from other online resources discussing medical crowdfunding and the related ethical questions. The review highlighted the benefits of crowdfunding as well as the under-exploration of the risk of having patients' desires and human rights undermined during online fundraising campaigns. Majority of these campaigns get initiated on behalf of the patients, especially the very sick and dependant. The ethical questions raised relate to the voluntariness of informed consent and the possibility of patients being used as a means to an end. Vulnerability of patients may expose them to coercion, undue influence, manipulation, and violation of their human rights. The success of these campaigns is influenced by the digital skills, pre-existing social networks and, the emotional potency. Healthcare is a public good, and online market forces should not determine access to essential health services. The benefits of crowdfunding cannot be subverted, but it can perpetuate unintended injustices, especially those arising from socio-economic factors. Conclusions: Policymakers ought to monitor the utilisation of crowdfunding sites to identify policy failures and unmet essential health care needs responsible for driving individuals to use these platforms. The upholding of human rights and the fundamental respect of the individual's wishes is a moral imperative. The need for an ethics framework to guide different stakeholders during medical crowdfunding needs further examination.
... [6,7] Considering the growing prevalence and ethical concerns of medical crowdfunding, there is great need for empirical investigations regarding its social and ethical implications. [8,9] Scholars in developed countries start to conduct empirical studies in Canada [4] and the USA [7,10,11] as well as on specific topics, such as transplantation [12] and stem-cell treatment. [13,14] However, little attention has been paid to medical crowdfunding in developing countries with insufficient insurance coverage and a dire need for medical charity. ...
... It remains unclear what ethical implications medical crowdfunding have in the Chinese context. Previous research has speculated several significant ethical concerns of medical crowdfunding in developed countries, including the veracity of the campaign description [5,6], fairness and efficiency of resource allocation, [6,8] systemic injustice, [6,7] autonomy of the recipient and the family, [5] breach of privacy, [6] rights and obligations of medical professionals, [8] and the commodification of healthcare. [5,6] We examined whether these concerns are relevant to medical crowdfunding in China in Table 4 based on the empirical findings and contextual information reported in previous sections. ...
... It remains unclear what ethical implications medical crowdfunding have in the Chinese context. Previous research has speculated several significant ethical concerns of medical crowdfunding in developed countries, including the veracity of the campaign description [5,6], fairness and efficiency of resource allocation, [6,8] systemic injustice, [6,7] autonomy of the recipient and the family, [5] breach of privacy, [6] rights and obligations of medical professionals, [8] and the commodification of healthcare. [5,6] We examined whether these concerns are relevant to medical crowdfunding in China in Table 4 based on the empirical findings and contextual information reported in previous sections. ...
Article
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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 health spending, the market for medical crowdfunding is booming. However, relevant research was conducted exclusively in North America and Europe; little is known about medical crowdfunding activities inother contexts. As a first step towards filling this knowledge gap, this study depicts the realities of medical crowdfunding in a middle-income country China through empirical investigation and ethical analysis. We examine 100 randomly selected medical campaigns from a major Chinese crowdfunding platform and analyse the relevance of the previously identified ethical concerns to the Chinese context. The empirical findings show that Chinese campaigns have low and uneven success rates, require legally the participation of charitable organisations and focus on financial distress and family values in appealing for donations. In addition, the ethical analysis suggests that medical crowdfunding in China shares several ethical concerns raised in developed countries such as the veracity of claims and privacy violation. More importantly, our research reveals the inadequacy of current evidence and the lack of indicators to evaluate ethical issues in practice. Additional research is needed to better understand this fundraising practice across different social and cultural contexts.
... When these traditional modes of raising extra money to cover medical expenses fail, some patients may look to crowdfunding as a source for financial assistance through websites frequently used for business ventures also requiring alternative financing (e.g. GoFundMe ® , Indiegogo ® , and Kickstarter ® ) [1][2][3][4]. In the US, about one in five adults (22%) have contributed to a crowdfunding campaign of any kind, while approximately 3% have created their own campaign [5]. ...
... While crowdfunding may offer benefit to some patients, there may be equity concerns when considering it may advantage wealthier patients with the means to utilize online networks, patient groups with higher personal appeal or social standing, or patients with health conditions that may be interpreted as demonstrating a higher level of deservingness [4,11,12]. In an analysis of lung cancer crowdfunding pages, authors found that pages that explicitly state the patient was not a smoker were more successful, suggesting a 'blame the victim' attitude may have contributed to fundraising disparities [13]. ...
... In the case of GoFundMe ® crowdfunding, patients with highly stigmatized conditions may attempt to craft a message or request that reflects this similar type of bias. This study provides additional evidence that there may be disparities and equity concerns with the use of GoFundMe ® crowdfunding for health services, as patient groups with less personal appeal or social standing may be further disadvantaged when seeking financial support from the public [4,[11][12][13]. A large majority of HCV patients in our sample did not disclose the source of their infection as a component of their page 1 Countries with a GoFundMe listing related to Hepatitis C description. ...
Article
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Background: Successful medical crowdfunding campaigns may alleviate or even eliminate the financial burden of expensive, cumulative medical bills. GoFundMe® crowdfunding pages for hepatitis C virus (HCV) patients were reviewed and analyzed to better understand the characteristics that contribute to a successful fundraising campaign in a disease often associated with patients with a lower social standing or stigma. Methods: A pilot cross-sectional study of all publicly available GoFundMe® crowdfunding pages was conducted for posts related to HCV on GoFundMe® in June 2019. Similar to data extraction steps in a systematic literature review, page data were reviewed to identify whether the source of the patient's HCV infection was disclosed, if disclosed then how did the patient report contracting the disease, and all costs reported in the description as part of the rationale for requesting funds. Descriptive statistics of category and numeric variables were reported for the full sample, and exploratory analyses were conducted to determine any potential associations with categorical variables and the amount of donations received, categorized as small (< US$1000), moderate (US$1000-4999), and large (≥ US$5000). Results: A total of 685 unique GoFundMe® pages were included in the analysis. Only 30% (206/685) of the pages disclosed the source of HCV infection. Of those that disclosed a virus source, 86% (177/206) described a source that appeared more socially desirable to our research team (blood transfusion, organ transplant, occupational exposure, etc.). In terms of actual donations received by a page, 46% (312/685) were less than US$1000, 38% (262/685) were between US$1000 and US$4999, and 16% (111/685) were US$5000 or more. Disclosing the virus source was associated with a higher donation category (p = 0.0099). Conclusion: These exploratory findings yield important insights, both for patients or caregivers seeking support on GoFundMe® crowdfunding websites and for researchers interested in exploring the types of costs self-reported by patients in their public requests for financial assistance.
... The popularity of medical crowdfunding can be attributed to filling a gap in healthcare financing, particularly in contexts where universal healthcare or comprehensive medical insurance is not present or accessible [5,8,9]. Crowdfunding platforms such as GoFundMe allow users to raise funds for medical costs that they otherwise could not have afforded or would have struggled to afford [8,9]. ...
... The popularity of medical crowdfunding can be attributed to filling a gap in healthcare financing, particularly in contexts where universal healthcare or comprehensive medical insurance is not present or accessible [5,8,9]. Crowdfunding platforms such as GoFundMe allow users to raise funds for medical costs that they otherwise could not have afforded or would have struggled to afford [8,9]. Common medical reasons that users campaign for are cancer treatment, experimental treatments for various diseases, and elective treatments not covered by health insurance [7]. ...
Article
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Background Medical crowdfunding is the process of using a crowdfunding platform to raise funds for medical treatment and associated expenses, such as missing work or transportation costs to access care. This type of crowdfunding has become increasingly popular, and is an effective tool to raise financing for medical treatment in the absence of insurance. However, it is accompanied by questions of which diseases or treatments are viewed as worthy to fund and which do not fit the criteria of worthiness. In the context of an abortion, a legitimate and important medical procedure, there is a lack of research that determines if campaigners can successfully utilize GoFundMe to pay for abortions and abortion related services and costs given the social stigma around this procedure. Here, we explore the outcomes of crowdfunding campaigns for stigmatized needs and conditions by examining campaigns related to abortion. Methods A total of 211 campaigns that utilized the term “abortion” were retrieved on the medical-section of the GoFundMe crowdfunding platform. These results were thematically analyzed by each author and two distinctive categories were identified to group the campaigns. Results The categories of campaigns using the term “abortion” were: campaigns seeking funds to access abortion related services (n = 84) and campaigns using the choice not to terminate pregnancy or the harms of abortion as a reason to give (n = 127). The number of donors, number of Facebook shares, campaign location, funding requested, funding pledged, campaign creation date, relation between the recipient and campaigner, and proposed use for the funds were recorded for each included campaign. Conclusions This study suggests that certain conditions or diseases may be less successful in medical crowdfunding based on perceived features of worthiness, such as in the case of abortion. In the categories we identified, campaigns seeking funds to access abortion-related services were less successful than campaigns using choosing not to terminate a pregnancy or the harms of abortion as a reason to give. This is an area of concern in medical crowdfunding – that certain medical needs will not be funded equitably.
... Crowdfunding is a relatively novel strategy for patients and their families to source funds during times of added financial stress. 1,2 Approximately eight million Americans have launched a crowdfunding campaign to cover health-related expenses. 3 Fifty million Americans report they have contributed to an online, health-related crowdfunding campaign themselves, which may serve as a lens into national health inequities. ...
... Crowdfunding platforms facilitate the opportunity for alignment of patient and donor priorities, ultimately permitting strategic fundraising towards medical expenses. 2 Previous work by Cohen et al. highlighted a significant database of crowdfunding campaigns for patients with prevalent cancer types. 10 When compared with our kidney cancerspecific analysis, the findings from both studies appeared to support one another. ...
Article
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Background Cancer patients incur high care costs; however, there is a paucity of literature characterizing unmet financial obligations for patients with urologic cancers. Kidney cancer patients are particularly burdened by costs associated with novel systemic treatments. This study aimed to ascertain the characteristics of GoFundMe® crowdfunding campaigns for patients with kidney cancer, in order to better understand the financial needs of this population. Methods We performed a cross-sectional, quantitative, and qualitative analysis of all kidney cancer GoFundMe® campaigns since 2010. Fundraising metrics such as goal funds and amount raised, were extracted. Eight independent investigators collected patient, disease and campaign-level variables from campaign stories (κ = 0.72). In addition, we performed a content analysis of campaign narratives spotlighting the primary appeal of the patient's life story. Results A total of 486 GoFundMe® kidney cancer campaigns were reviewed. The median goal funds were 10,000USD [IQR = 5000, 20,000] and the median amount raised was 1450USD [IQR = 578, 4050]. Most campaigns were for adult males (53%) and 62% of adults had children. A minority were for pediatric patients (17%). Thirty-seven percent of adult patients were primary wage earners and 43% reported losing their job or substantially reducing hours due to illness. Twenty-nine percent reported no insurance or insufficient coverage. Campaigns most frequently sought funds for medical bills (60%), nonmedical bills (27%), and medical travel (23%). Qualitative campaign narratives mostly emphasized patients’ hardship (46.3%) or high moral character (35.2%). Only 8% of campaigns achieved their target funds. Conclusions Despite fundraising efforts, patients with kidney cancer face persistent financial barriers, incurring both medical and nonmedical cost burdens. This may be compounded by limited or no insurance. Cancer care providers should be aware of financial constraints placed on kidney cancer patients, and consider how these may impact treatment regimens.
... Another recent survey indicates that among all users who contribute to crowdfunding, 68% have donated to non-reward-based crowdfunding projects to help someone out (Smith 2016). The benefits of medical crowdfunding manifest, for example, through funding for medical expenses that medical insurance and other safety-net institutions cannot cover and easing the financial burdens from unexpected illness (Jopson 2018, Young and Scheinberg 2017). ...
... 000-000, © 0000 INFORMS 3 Existing work on crowdfunding performance mostly focus on analyzing how time-invariant case attributes influence the outcome (Du et al. 2015, Greenberg et al. 2013. These attributes, including fundraisers' age, gender, social connections and ability to use online tools have been found to influence crowdfunding success (Young andScheinberg 2017, Valle 2017). However, time-varying case attributes have not been examined closely in existing studies to explore how they can provide dynamic predictions or updates for the total sum of donations a case will receive. ...
Preprint
Medical crowdfunding is a popular channel for people needing financial help paying medical bills to collect donations from large numbers of people. However, large heterogeneity exists in donations across cases, and fundraisers face significant uncertainty in whether their crowdfunding campaigns can meet fundraising goals. Therefore, it is important to provide early warnings for fundraisers if such a channel will eventually fail. In this study, we aim to develop novel algorithms to provide accurate and timely predictions of fundraising performance, to better inform fundraisers. In particular, we propose a new approach to combine time-series features and time-invariant features in the deep learning model, to process diverse sources of input data. Compared with baseline models, our model achieves better accuracy and requires a shorter observation window of the time-varying features from the campaign launch to provide robust predictions with high confidence. To extract interpretable insights, we further conduct a multivariate time-series clustering analysis and identify four typical temporal donation patterns. This demonstrates the heterogeneity in the features and how they relate to the fundraising outcome. The prediction model and the interpretable insights can be applied to assist fundraisers with better promoting their fundraising campaigns and can potentially help crowdfunding platforms to provide more timely feedback to all fundraisers. Our proposed framework is also generalizable to other fields where diverse structured and unstructured data are valuable for predictions.
... Many scholars have highlighted the likelihood that education, social class, demographic characteristics, attractiveness, type of medical condition, and size of social network could all impact the success of campaigns, and thus access to healthcare. (2,(12)(13)(14) Yet with a few exceptions, empirical research on how these characteristics shape MCF access or success has been very limited. (3,(15)(16)(17) Despite widespread concerns among scholars about the ethical ramifications of MCF, and in particular its potential impacts on health disparities, (2,(12)(13)(14)18,19) there has been very limited empirical research to help answer these questions and inform future policy regarding the industry. ...
... (2,(12)(13)(14) Yet with a few exceptions, empirical research on how these characteristics shape MCF access or success has been very limited. (3,(15)(16)(17) Despite widespread concerns among scholars about the ethical ramifications of MCF, and in particular its potential impacts on health disparities, (2,(12)(13)(14)18,19) there has been very limited empirical research to help answer these questions and inform future policy regarding the industry. A 2019 paper by van Duynhoven and colleagues spatially assessed the geography of Canadian cancer campaigns, finding that they were most common in urban areas with higher levels of income, home ownership, and education. ...
Preprint
Full-text available
Americans are increasingly relying on crowdfunding to pay for the costs of healthcare. In medical crowdfunding, 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. 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. Our analyses examine 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: non-white users 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 how technology fuels health inequities, and about 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.
... Moreover, inequity, barriers to access, invasion of privacy, fraud, and dangerous therapies have all been associated with MCF, but are poorly understood. 4,7,[15][16][17][18][19] The goal of this study was to evaluate three important aspects of MCF in different healthcare systems: the cause for turning to crowdfunding, characteristics of beneficiaries and campaigns, and factors associated with funding success. We selected GoFundMe as an ideal environment to study. ...
... Goal, median (IQR), $ US c 30,000 (11,400 -57,000) 19,000 (10,260 - ...
Preprint
Full-text available
Background: Medical crowdfunding is increasingly used to finance personal healthcare costs in Canada (CAN), United Kingdom (UK), and United States (US) despite major differences in their healthcare systems. Yet, it lacks comparative descriptive research to guide policy changes that can promote equitable and accessible healthcare. Methods: We conducted a cross-sectional analysis of Canadian, British, and American campaigns between February 2018 and March 2019 on the GoFundMe platform (n=3,396). We extracted and manually reviewed variables from campaigns on each country's GoFundMe discovery webpage, explored campaign characteristics, and compared each country's campaign demographics to its respective national census. We fit multivariate linear regression models for funds raised for the cohort and for each country. Results: We examined 1,091 Canadian, 1,082 British, and 1,223 American campaigns. US campaigns (median [IQR] $38,204 [$31,200 to $52,123]) raised more funds than those in CAN ($12,662 [$9,377 to $19,251]) and the UK ($6,285 [$4,028 to $12,348]). Female (38.4% of campaigns vs. 50.9% of US census; p<0.001) and black (5.3% of campaigns vs. 13.4% of US census; p<0.001) beneficiaries were underrepresented in US campaigns. In the full cohort, blacks raised $4,007 less (95% confidence interval [CI] -$6,913 to -$1,101; p=0.007) and males raised $1,742 more (95% CI $583 to $2,901; p=0.003) per campaign. Cancer was the most common diagnosis represented overall (54.5%). Across all diagnoses, campaigns primarily for routine treatment expenses were three times more common in the United States compared to Canada and the United Kingdom (CAN 21.9% vs. UK 26.6% vs. US 77.9%; p<0.001). However, campaigns with routine care were less successful overall, raising $4,589 less per campaign (CI -$6,429 to -$2,749; p<0.001). Campaigns primarily for alternative treatment expenses were nearly five times as common for cancer (24%) than for non-cancer (5%) diagnoses. Discussion: The trends observed suggest that there are important gaps in healthcare provision in all of the countries examined across a wide range of diagnoses. Although medical crowdfunding has the potential to provide short-term relief from medical financial burden for a privileged subset of patients, it may carry wider-reaching adverse societal effects including the promotion of racial and gender disparities in healthcare. Further work is needed to inform policy changes that promote equitable and accessible healthcare through this practice.
... Crowdfunding, which enables financing through pooling of small contributions [1], is attractive and increasingly available to patients. In the era of social media, individual medical campaigns raise over one million euros (EUR) for specific needs, with successful collections breaking economic barriers and enabling access to the most sophisticated treatment modalities, which are not covered by health insurance [2]. ...
... Not all such campaigns meet their financial targets and it is unclear why [5]. It is possible that there is an emotional impact that conditions the viral spread and success of an appeal [1,6,7]. There are increasing concerns that highly emotive campaigns may outrival those that remain more reasonable but unspectacular [8]. ...
Article
Background: We aimed to identify factors of success in medical crowdfunding campaigns on the largest Polish platform: siepomaga.pl. Material and methods: All campaigns initialised by patients in the years 2009-2017 were included. The data comprised characteristics of the collections: financial target, raised sum, aim, type of disease, Facebook shares, age category, and the exact collection period. Campaign success was defined as collecting the target sum. Emotional expression on the main photograph was analysed using the Azure Cognitive Service. Logistic regression analysis was performed. Results: From a total of 2,656 collections, 1,725 (65%) were successful and 42.4 million EUR were raised in total. 2,024 (76.2%) of campaigns were dedicated to children. Successful collections not only received more donations, but were also supported, on average, with larger payments. Fortunate campaigns asked for less money and ended earlier (all p < 0.001). The odds of success were increased by: at least 50 Facebook shares (OR, 95% CI: 1.75, 1.46-2.10), the receiver being a child (1.46, 1.18-1.80), aim: dream come true (1.53, 1.06-2.20) or suffering from a congenital disease (1.34, 1.08-1.67), whereas financial target of no less than 4000 EUR (0.41, 0.34-0.52), aim: rehabilitation (0.51, 0.41-0.64), psychiatric disease (0.52, 0.38-0.71), and maladies of the eye or the ear (0.56, 0.39-0.81) were associated with campaign failure. After adjustment, dominance of happiness on the main photograph decreased the odds of success (0.71, 0.59-0.86). Conclusion: Younger age, lower financial goal, greater exposure on Facebook, aim, disease and emotional expression were associated with success of medical crowdfunding.
... [11][12][13][14] However, inequity, barriers to access, invasion of privacy, fraud, and dangerous, unproven therapies have been associated with MCF, but are poorly understood. 4,7,[15][16][17][18][19] Despite its growth and the concerns surrounding crowdfunding, there is a paucity of empirical research on MCF, including research on sociodemographic characteristics of beneficiaries and the diagnoses and treatments championed. ...
Article
Full-text available
Importance: Despite major differences in their health care systems, medical crowdfunding is increasingly used to finance personal health care costs in Canada, the UK, and the US. However, little is known about the campaigns designed to raise monetary donations for medical expenses, the individuals who turn to crowdfunding, and their fundraising intent. Objective: To examine the demographic characteristics of medical crowdfunding beneficiaries, campaign characteristics, and their association with funding success in Canada, the UK, and the US. Design, setting, and participants: This cross-sectional study extracted and manually reviewed data from GoFundMe campaigns discoverable between February 2018 and March 2019. All available campaigns on each country domain's GoFundMe medical discovery webpage that benefitted a unique patient(s) were included from Canada, the UK, and the US. Data analysis was performed from March to December 2019. Exposures: Campaign and beneficiary characteristics. Main outcomes and measures: Log-transformed amount raised in US dollars. Results: This study examined 3396 campaigns including 1091 in Canada, 1082 in the UK, and 1223 in the US. Campaigns in the US (median [IQR], $38 204 [$31 200 to $52 123]) raised more funds than campaigns in Canada ($12 662 [$9377 to $19 251]) and the UK ($6285 [$4028 to $12 348]). In the overall cohort per campaign, Black individuals raised 11.5% less (95% CI, -19.0% to -3.2%; P = .006) than non-Black individuals, and male individuals raised 5.9% more (95% CI, 2.2% to 9.7%; P = .002) than female individuals. Female (39.4% of campaigns vs 50.8% of US population; difference, 11.3%; 95% CI, 8.6% to 14.1%; P < .001) and Black (5.3% of campaigns vs 13.4% of US population; difference, 8.1%; 95% CI, 6.8% to 9.3%; P < .001) beneficiaries were underrepresented among US campaigns. Campaigns primarily for routine treatment expenses were approximately 3 times more common in the US (77.9% [272 of 349 campaigns]) than in Canada (21.9% [55 of 251 campaigns]; difference, 56.0%; 95% CI, 49.3-62.7%; P < .001) or the UK (26.6% [127 of 478 campaigns]; difference, 51.4%; 95% CI, 45.5%-57.3%; P < .001). However, campaigns for routine care were less successful overall. Approved, inaccessible care and experimental care raised 35.7% (95% CI, 25.6% to 46.7%; P < .001) and 20.9% (95% CI, 13.3% to 29.1%; P < .001), respectively, more per campaign than routine care. Campaigns primarily for alternative treatment expenses (16.1% [174 of 1079 campaigns]) were nearly 4-fold more common for cancer (23.5% [144 of 614 campaigns]) vs noncancer (6.5% [30 of 465 campaigns]) diagnoses. Conclusions and relevance: Important differences were observed in the reasons individuals turn to medical crowdfunding in the 3 countries examined that suggest racial and gender disparities in fundraising success. More work is needed to understand the underpinnings of these findings and their implications on health care provision in the countries examined.
... Although qualitative and theoretical work on medical crowdfunding has suggested that the practice may perpetuate socioeconomic health disparities, 9,11,12,44 quantitative work on cancer crowdfunding is limited. One Canadian study of 1788 campaigns linked geospatial campaign counts with corresponding socioeconomic data and found a positive association between crowdfunding use and SES. 13 higher goal amounts among uninsured and underinsured beneficiaries. ...
Article
Full-text available
Importance Financial toxicity resulting from cancer care poses a substantial public health concern, leading some patients to turn to online crowdfunding. However, the practice may exacerbate existing socioeconomic cancer disparities by privileging those with access to interpersonal wealth and digital media literacy. Objective To test the hypotheses that higher county-level socioeconomic status and the presence (vs absence) of text indicators of beneficiary worth in campaign descriptions are associated with amount raised from cancer crowdfunding. Design, Setting, and Participants This cross-sectional analysis examined US cancer crowdfunding campaigns conducted between 2010 and 2019 and data from the American Community Survey (2013-2017). Data analysis was performed from December 2019 to March 2020. Exposures Neighborhood deprivation index of campaign location and campaign text features indicating the beneficiary’s worth. Main Outcomes and Measures Amount of money raised. Results This study analyzed 144 061 US cancer crowdfunding campaigns. Campaigns in counties with higher neighborhood deprivation raised less (–26.07%; 95% CI, –27.46% to –24.65%; P < .001) than those in counties with less neighborhood deprivation. Campaigns raised more funds when legitimizing details were provided, including clinical details about the cancer type (9.58%; 95% CI, 8.00% to 11.18%; P < .001) and treatment type (6.58%; 95% CI, 5.44% to 7.79%; P < .001) and financial details, such as insurance status (1.39%; 95% CI, 0.20% to 2.63%; P = .02) and out-of-pocket costs (7.36%; 95% CI, 6.18% to 8.55%; P < .001). Campaigns raised more money when beneficiaries were described as warm (13.80%; 95% CI, 12.30% to 15.26%; P < .001), brave (15.40%; 95% CI, 14.11% to 16.65%; P < .001), or self-reliant (5.23%; 95% CI, 3.77% to 6.72%; P < .001). Conclusions and Relevance These findings suggest that cancer crowdfunding success ay disproportionately benefit those in high–socioeconomic status areas and those with the internet literacy necessary to portray beneficiaries as worthy. By rewarding those with existing socioeconomic advantage, cancer crowdfunding may perpetuate socioeconomic disparities in cancer care access. The findings also underscore the widespread nature of financial toxicity resulting from cancer care.
... In recent years, medical crowdfunding has emerged as a growing area of opportunity for raising money from donors to pay for healthcare and medical expenses (Bassani, Marinelli, & Vismara, 2019;Young & Scheinberg, 2017). Since the early period of medical crowdfunding (Sisler, 2012), more and more websites and high-profile cases have appeared, one after another (Ren, Raghupathi, & Raghupathi, 2020). ...
Article
Medical crowdfunding is a rapidly growing healthcare practice whereby individuals leverage online platforms to assemble numerous small donations for health-related needs. In China, due to limited medical resources and disparities between urban and rural public healthcare systems, medical crowdfunding can play a complementary role in supporting the current publicly-funded medical insurance system. To date, few studies have investigated the determinants of successful medical crowdfunding projects in China. By collecting data from the Tencent GongYi platform, one of the largest government-authorized online crowdfunding platforms in China, this exploratory study adopts a sequential qualitative-quantitative mixed-methods approach to identify potential factors that influence medical crowdfunding practices. The findings suggest that health-related characteristics have the most significant influence on the success of medical crowdfunding in China. Specifically, projects that target non-major diseases and diseases with low mortality rates and/or high frequency are more likely to draw significant attention and succeed. The stages of disease diagnosis and treatment also have an impact. In addition, a number of demographic and social factors, such as age, location, place of residence of the fundraiser, and the social capital of the project initiator were found to be significantly related to project success. This study sheds light on local practices in medical crowdfunding in China and provides insights into the design and implementation of medical crowdfunding projects.
... Campaign hosts must write compelling and sympathetic narratives considered worthy of donations by potential donors-an issue described previously. [26][27][28][29][30] The financial success of the campaigns demonstrates the perceived credibility of claims of CBD's efficacy for cancer-related care. The campaigns were very successful and averaged $5946.97 ...
Article
Objectives. To use crowdfunding campaigns to better understand how cannabidiol (CBD) is represented (and misrepresented) as cancer-related care. Methods. We analyzed CBD-related crowdfunding campaigns (n = 155) created between January 2017 and May 2019 in multiple countries on GoFundme.com. Results. More than 81.9% of campaigns fundraised CBD for curative or life-prolonging reasons, and 25.2% fundraised for pain management. Conclusions. Most campaigns seeking funds for CBD for cancer-related care on GoFundMe are for curative or life-prolonging purposes and present CBD definitively as an effective treatment option. In general, campaigners supported their funding requests with anecdotal claims of efficacy and referenced sources of information that were either not evidence-based or that misrepresented existing evidence. Public Health Implications. Misinformation around CBD for cancer is widespread on medical crowdfunding campaigns. Given the potential adverse impact, crowdfunding platforms, like GoFundMe, must take steps to address their role in enabling and spreading this misinformation.
... Firstly, the current research on donation-based crowdfunding mainly focuses on the concept, characteristics, impact factors and operation mechanism [16,17]. These attributes related to the performance of medical financing need to be further studied [11]. ...
Article
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The coronavirus disease (COVID-19) pandemic has flooded public health organizations around the world, highlighting the significance and responsibility of medical crowdfunding in filling a series of gaps and shortcomings in the publicly funded health system and providing a new fundraising solution for people that addresses health-related needs. However, the fact remains that medical fundraising from crowdfunding sources is relatively low and only a few studies have been conducted regarding this issue. Therefore, the performance predictions and multi-model comparisons of medical crowdfunding have important guiding significance to improve the fundraising rate and promote the sustainable development of medical crowdfunding. Based on the data of 11,771 medical crowdfunding campaigns from a leading donation-based platform called Weibo Philanthropy, machine-learning algorithms were applied. The results demonstrate the potential of ensemble-based machine-learning algorithms in the prediction of medical crowdfunding project fundraising amounts and leave some insights that can be taken into consideration by new researchers and help to produce new management practices.
... Research on medical crowdfunding has highlighted the potential of this new media form to create unfairnesses and pose ethical challenges for users, their social networks, and society more broadly [8,[28][29][30][31][32]. However, very little research has documented how health disparities shape access to, and outcomes from, crowdfunding campaigns-indeed, how crowdfunding itself may fuel health disparities [27,33]. ...
Article
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Background The 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. Results Drawing 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. Conclusions Rather 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.
... Finally, leveraging the use of online fundraising platforms, like GoFundMe on an individual basis or Watsi on a global scale, to pay for one's surgery has been a financial lifesaver for many, even in HICs. Since the inception of the internet, crowdfunding has emerged as an online tool for patients seeking financial assistance for medical and surgical expenses (36,37). In the United States, Cohen et al. have demonstrated a significant database of cancer patients seeking aid through GoFundMe (38). ...
Article
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Since the launch of the Lancet Commission on Global Surgery (LCOGS) in 2015, significant attention and interest have been invested in breaking down the barriers that prevent universal access to essential surgical, anesthesia, and obstetric services. Innovation, or the process of creatively resolving a problem, is a crucial strategy for addressing complex challenges in global health and global surgery. While technology has traditionally taken the spotlight, novel ideas that support surgical systems strengthening and advance the agenda of achieving access for all should also be highlighted. This narrative review will focus on the principal ideas and trends in global surgery innovation, stretching beyond habitual technological advancements. By centering the narrative around non-technological achievements, we will explore emerging systemic innovation in health systems strengthening, financial capacity, advocacy and research and partnerships. From the development of National Surgical, Obstetric, and Anesthesia Plans (NSOAPs) to the creation of collaborative authorship, systemic innovations have and will continue to improve delivery and quality of essential surgical services in areas of need around the world.
... It refers to online platforms that allow for funding of projects or ventures by a large number of people. 1 Originally designed to help startup companies get off the ground, crowdfunding has also begun to play a prevalent role in the field of medicine. 2 This has become increasingly apparent in a number of recent publications looking at its use for various aspects of healthcare. [3][4][5][6] With the cost of healthcare on the rise, the number of medications and treatments that are not covered by conventional insurance plans is increasing. ...
Article
Introduction: Crowdfunding is becoming an increasingly used resource for patients to cover costs related to medical care. These costs can be related directly to treatments or indirectly to loss of income or travel-related costs. Little is known as to the extent of which crowdfunding is used for urological disease here in Canada. This study offers a first look at the prevalence of crowdfunding for urological disease and the factors surrounding its use. Methods: In January 2020, we queried the GoFundMe internal search engine for fundraising campaigns regarding urological ailments. Results were categorized according to the major organs of urological disease. Results: Crowdfunding campaigns are very prevalent within several areas of urology. Prostate cancer and chronic kidney disease represent the most frequent reason for campaigns. Fundraising goals and actual funds raised for malignant disease were significantly more than for benign disease. Interestingly, there was a significant portion of crowdfunding campaigns to cover costs for non-conventional treatments and transplant tourism. Conclusion: Crowdfunding use to help cover direct and indirect costs of medical care is becoming increasingly apparent through several facets of medicine. This study shows that this statement holds true when looking at patients with urological disease in Canada. As urologists, we need to be aware of this trend, as it highlights the often-unforeseen financial burdens experienced by our patients.
... Some recent studies are starting to explore how factors such as fundraisers' social connections and ability to use online tools, emotions and design of presentation of the case descriptions are some likely sources of such heteogeneity (Young andScheinberg 2017, Valle 2017). However, how these attributes relate to medical fundraising goals remain underexplored. ...
Conference Paper
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Medical crowdfunding has seen rapid growth in recent years and it has become a popular channel for people needing financial help. However, there exists large heterogeneity in donations across cases and fundraisers face significant uncertainty in whether their crowdfunding campaigns can meet fundraising goals. We aim to develop novel algorithms to provide accurate and timely predictions of fundraising performance, to better inform fundraisers. For this purpose, we use a combination of machine learning techniques to extract interpretable insights and provide accurate predictions. We first analyze the time-varying features from daily observations of case metrics, conduct a multivariate time series clustering and identify four typical temporal donation patterns. Then, we incorporate the clustering patterns and the time-invariant features to design a deep learning model that provides daily updated predictions of the total amount of money fundraisers likely receive. Compared with baseline models, our model achieves better accuracy on average and requires a shorter observation window of the time-varying features from the campaign launch to provide robust predictions with high confidence. Our modeling approach can be applied to assist fundraisers' decisions on promoting their campaigns better and can potentially help crowdfunding platforms 1 design more customized suggestions to improve the chances of success for all cases. The proposed framework is generalizable to apply to other fields with both time-varying and time-invariant information.
... In addition to raising funds for treatment, crowdfunding in medicine has research goals (conducting clinical trials and access to experimental equipment) [7]. ...
Article
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In modern society, it is difficult to imagine a scope of activity that would not be associated with Internet technologies. They provide opportunities not only to activate the information resources of society, but also to organize information interaction between people, that certainly helps in promotion of scientific projects cost-effectively. However, it is often the case that many projects, ideas and research programs remain at the development stage. Initially it is very important to determine what exactly are the final goal and the main advantage of the project. Only then, after defining the specific tasks it will be possible to identify stakeholders who can bring funding in the project. In the article we analyze different ways of search for funding of medical projects like crowdfunding, investment funds, and government resources. The problems of the use of crowdfunding in fundraising for medical and clinical research are analyzed. We came to two conclusions. Firstly we suggest inviting graduates who specialize in innovation promotion in this process and reveal some benefits for both students and scientists/business. Secondly, we propose the concept of digital services connection, which can make crowdfunding of medical research a safe and effective means of developing domestic medicine.
... Crowdfunding is defined as financing predetermined aims through pooling of small contributions [1]. Collections for health needs via Internet donations are a novel phenomenon and have gained considerable public attention. ...
Article
Introduction: Patients with rheumatic diseases may require costly treatment and continuous rehabilitation, which Internet collections may finance. We aimed to characterize medical crowdfunding campaigns for the needs of Polish people with rheumatic diseases. Material and methods: We utilized data from the largest medical crowdfunding platform in Poland, Siepomaga.pl. All collections in the years 2009-2017 for the needs of people with rheumatic diseases were identified. Results: Twenty-three of 2,656 collections were included (0.9%). Sixty-five and two percent of campaigns collected the financial target. The median amount of collected funds was 3,369 euros. Ten collections concerned conservative treatments (drug and/or rehabilitation), seven financed surgery, five supported the acquisition of medical equipment or its repair, and one aimed at facilitating a diagnostic consultation with a foreign specialist. Conclusions: Polish patients with rheumatic diseases collect funds via medical crowdfunding, mostly for needs not covered by public healthcare or to obtain better health services in the private sector.
... The organizing of charitable crowdfunding campaigns enables people in need to publicly appeal for help and collect many small contributions from a range of donors (Zhao & Shneor, 2020). Indeed, individuals are increasingly turning to crowdfunding to pay for personal expenses such as medical care (Berliner & Kenworthy, 2017;Martinez, 2019;Young & Scheinberg, 2017), particularly after unexpected and traumatic events (Kneese, 2018). Previous work on charitable crowdfunding has focused on investigating the common elements of successful campaigns (Gleasure & Feller, 2018;Rhue & Robert Jr., 2018;Xu, 2018), the strategies organizers can employ to make their campaigns more persuasive (Althoff & Leskovec, 2015;Chapman, Masser, & Louis, 2019;Tanaka & Voida, 2016), and the essentially altruistic reasons donors choose to give (Andreoni, 1989;Gleasure & Feller, 2016;Zhao & Shneor, 2020). ...
Article
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Crowdfunding enables the organizing of support for victims of a tragedy from a wide range of sources. While this support can be financial and non-financial, we know relatively little about the non-financial support donors provide. Donors’ words can have substantial positive and negative effects on sufferers; however, donors are also often limited in the extent to which they can provide relevant support due to unfamiliarity with sufferers’ lives. Therefore, it is important to investigate the messages donors leave on campaign pages. In this inductive study, we investigate online responses to a school shooting to explain how donors’ responses to charitable crowdfunding campaigns manifest. The emergent crowdfunding model of public displays of compassion suggests two core types of responses depending on the nature of the public appeal. Our insights extend the boundaries of the theory on charitable crowdfunding by illustrating the benefits of relaxing implicit assumptions regarding the nature of value creation and the uniformity of donor responses. The study has implications for organization theory on non-monetary value creation in crowdfunding, heterogeneity in crowdfunding responses, and compassion organizing and culture building in organizations.
... In addition to the web map, a table was generated that showed the proportion of crowdfunding campaigns that belong in each quintile for each socioeconomic variable (see tables [2][3][4][5]. ...
Article
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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.
... Families of these patients may experience significant financial losses and psychosocial distress, and resources and support systems for family members caring for loved ones with DoC are limited. Some may turn to crowdfunding campaigns to continue aggressive treatments due to gaps in insurance coverage and exhausting all personal resources (a May 2021 search of the largest crowdfunding platform, GoFundMe, reveals over 400 campaigns for patients who are in VS/UWS or MCS; while many of these campaigns are United States based, there are numerous campaigns to raise funds for patients in other regions across the world).210 For some family members, there may be substantial opportunity costs, such as foregoing educational or professional opportunities because of the need to care for, and be available for, a recovering loved one. ...
Article
Neuroethical questions raised by recent advances in the diagnosis and treatment of disorders of consciousness are rapidly expanding, increasingly relevant, and yet underexplored. The aim of this thematic review is to provide a clinically applicable framework for understanding the current taxonomy of disorders of consciousness and to propose an approach to identifying and critically evaluating actionable neuroethical issues that are frequently encountered in research and clinical care for this vulnerable population. Increased awareness of these issues and clarity about opportunities for optimizing ethically-responsible care in this domain are especially timely given recent surges in critically ill patients with unusually prolonged disorders of consciousness associated with coronavirus disease 2019 (COVID-19) around the world. We begin with an overview of the field of neuroethics: what it is, its history and evolution in the context of biomedical ethics at large. We then explore nomenclature used in disorders of consciousness, covering categories proposed by the American Academy of Neurology, the American Congress of Rehabilitation Medicine, and the National Institute on Disability, Independent Living, and Rehabilitation Research, including definitions of terms such as coma, the vegetative state, unresponsive wakefulness syndrome, minimally conscious state, covert consciousness, and the confusional state. We discuss why these definitions matter, and why there has been such evolution in this nosology over the years, from Jennett and Plum in 1972 to the Multi-Society Task Force in 1994, the Aspen Working Group in 2002 and up until the 2018 American and 2020 European Disorders of Consciousness guidelines. We then move to a discussion of clinical aspects of disorders of consciousness, the natural history of recovery, and ethical issues that arise within the context of caring for persons with disorders of consciousness. We conclude with a discussion of key challenges associated with assessing residual consciousness in disorders of consciousness, potential solutions and future directions, including integration of crucial disability rights perspectives.
... Alongside an increase in crowdfunding campaigns to help individuals cover personal medical expenses (Martinez, 2019;Young & Scheinberg, 2017), start-ups developing medical technology (medtech) are increasingly turning to crowdfunding to facilitate product development and launch. Medtech refers to "articles, instruments, apparatuses, or machines that are used in the prevention, diagnosis or treatment of illness or disease, or for detecting, measuring, restoring, correcting, or modifying the structure or function of the body for some health purpose" (WHO, 2016, p.4). ...
Article
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Crowdfunding platforms enable entrepreneurs to bring to life ideas that may otherwise have remained unrealized. When crowdfunding campaigns go well, campaigners are able to fulfill their vision, funders’ engagement is rewarded, and society gains access to a range of new offerings. But some recent high-profile medical-technology campaigns have failed to deliver their promised rewards despite reaching and at times far exceeding their funding goals. The objectives of this article are to shed light on why donors fund campaigns that turn out to be too good to be true and to examine how this engagement reduces trust in crowdfunding. To this end, I explore the role of product creativity as a dual mechanism for both funding success and postfunding delivery failure. Product creativity is typically associated with positive crowdfunding outcomes. But in the context of medical-technology campaigns, product creativity may make community members more attracted to campaigns that are less likely to deliver on their campaign promises. This phenomenon then increases the likelihood that the campaign will reduce trust in crowdfunding, hurting donors, the focal venture, and future campaigners. I offer practical implications for crowdfunding platforms, campaigners, and supporters interested in learning more about the pitfalls associated with initially successful crowdfunding campaigns.
... Patients are also harnessing the power of the narrative to promote public awareness, build community and raise money and a profile for certain therapies. For example, the use of online crowdfunding has recently grown at an explosive rate [96,97]. Health related crowdfunding has proven to be a highly competitive affair, and campaign leaders often attempt to construct "worthy bodies" that justify or morally compel donation [98]. ...
Article
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Numerous social, economic and academic pressures can have a negative impact on representations of biomedical research. We review several of the forces playing an increasingly pernicious role in how health and science information is interpreted, shared and used, drawing discussions towards the role of narrative. In turn, we explore how aspects of narrative are used in different social contexts and communication environments, and present creative responses that may help counter the negative trends. As traditional methods of communication have in many ways failed the public, changes in approach are required, including the creative use of narratives.
... Thus in addition to increasing the quality of innovation and reducing development risks, OIS approaches can be used to generate ideas and tools to speed up availability and scaling. Crowd funding by patients, for example, may lead to more rapid production and market availability (Snyder et al. 2020, Young & Scheinberg 2017. This is particularly relevant in areas where patient innovators are racing against time. ...
Article
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Co-producing scientific research with those who are affected by it is an emerging phenomenon in contemporary science. This article summarizes and reflects on both the process and outcome of a novel experiment to co-develop scientific research proposals in the field of Open Innovation in Science (OIS), wherein scholars engaged in the study of open and collaborative practices collaborated with the “users” of their research, i.e., scientists who apply such practices in their own research. The resulting co-developed research proposals focus on scientific collaboration, open data, and knowledge sharing and are available as an appendix to this article. See the full article here: https://e-publishing.cern.ch/index.php/CIJ/article/view/1328
... GoFundMe is the most popularly used crowdfunding platform for personal health-related expenses [4,29], and for this reason we opted to conduct this analysis using campaigns hosted by this site. To start, we developed a list of broad keywords (e.g., medical, health, Canada, house, housing, home) to search using GoFundMe's search function that related to housing and health. ...
Article
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Background Online crowdfunding platforms such as GoFundMe fundraise millions of dollars annually for campaigners. Medical crowdfunding is a very popular campaign type, with campaigners often requesting funds to cover basic health and medical care needs. Here we explore the ways that health needs intersect with housing needs in Canadian crowdfunding campaigns. In Canada, both health and housing needs may be addressed through legislative or policy intervention, are public health priorities, and are perceived as entitlements related to people’s basic human rights. We specifically develop a classification scheme of these intersections. Methods We extensively reviewed Canadian crowdfunding campaigns on GoFundMe, the largest charitable crowdfunding platform, using a series of keywords to form the basis of the classification scheme. Through this process we identified five categories of intersection. We extracted 100 campaigns, 20 for each category, to ascertain the scope of these categories. Results Five categories form the basis of the classification scheme: (1) instances of poor health creating the need to temporarily or permanently relocate to access care or treatment; (2) house modification funding requests to enhance mobility or otherwise meet some sort of health-related need; (3) campaigns posted by people with health needs who were not able to afford housing costs, which may be due to the cost of treatment or medication or the inability to work due to health status; (4) campaigns seeking funding to address dangerous or unhealthy housing that was negatively impacting health; and (5) people describing an ongoing cyclical relationship between health and housing need. Conclusions This analysis demonstrates that health and housing needs intersect within the crowdfunding space. The findings reinforce the need to consider health and housing needs together as opposed to using a siloed approach to addressing these pressing social issues, while the classification scheme assist with articulating the breadth of what such co-consideration must include.
... However, there are some drawbacks in operating Medical Crowdfunding platform in Chinese market at present. Therefore, the platform should pay more attention to aspects of safety supervision and fund management of the platform, so as to develop towards a more perfect direction [1] . ...
Article
Full-text available
With the emergence of the Internet, Medical Crowdfunding platforms have been vigorously developed and have become a powerful supplement to China's medical security system. However, due to the development of the Medical Crowdfunding industry not finished enough, there are still some problems. Hence this article first explains the status quo of the Medical Crowdfunding platform, then the problems existing in the platform and finally elaborates the strategy of the Medical Crowdfunding platform to solve the crisis.
... Over the past several years, the flow of funds through online crowdfunding has grown at an explosive rate. [1,2] This has coincided with the rapid growth of companies providing crowdfunding platforms. For example, GoFundMe was valued at approximately $600 million when it struck a venture capital deal in 2015, [3] and has since been expanding: in January 2017, the company acquired the platform CrowdRise, [3] and in April 2018 it acquired YouCaring. ...
Article
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Background Medical 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. Methods A 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. Results Articles 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. Conclusions Crowdfunding 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.
... Though crowdfunding can temporarily increase access to insulin, ethical issues related to crowdfunding for diabetes care exist [28][29][30]. For example, crowdfunding websites encourage photos, videos, and ongoing updates, resulting in loss of privacy. ...
Article
Background: Individuals in need of medical care turn to crowdfunding websites to engage a “crowd” or group for financial support. In the last decade, access to insulin has decreased considerably for several reasons, including the rising cost of insulin, increasing popularity of high-deductible insurance plans, and increasing insurance premiums. Many people with diabetes are forced to ration or go without insulin, and they turn to crowdfunding websites to seek financial donations to purchase insulin needed to reduce health risks and mortality, and sustain quality of life. Objective: This study aimed to explore crowdfunding campaign requests to purchase insulin in the United States. Methods: In this retrospective, quantitative, and qualitative study, we coded the text of GoFundMe online crowdfunding campaigns and viral measures (shares, hearts, and comments) from February 25 to April 15, 2019. We described campaigns (N=205) and explored the factors associated with campaign success using correlations and qualitative thematic analysis. Results: The majority of campaigns were initiated by middle-aged adults (age 26-64 years; 77/205, 37.6%), those with type 1 diabetes (94/205, 45.9%), and those needing funds owing to insurance coverage issues (125/205, 61.0%). The factors associated with campaign success included requests for ≤US $500 (P=.007) and higher viral measures (shares, P=.007; hearts, P<.001; comments, P=.002). The following 4 themes emerged from the campaign text: (1) desire for self-management and survival, (2) diabetes management untenable given insulin access, (3) aftermath of insulin unaffordability, and (4) privacy issues with crowdfunding. Campaign comments were both supportive (tangible, informational, and emotional) and unsupportive (questioned the need for the campaign and deemed crowdfunding inappropriate). Conclusions: Despite crowdfunding websites being used to support the purchase of insulin, campaigns raised only a fraction of the money requested. Therefore, GoFundMe campaigns are not a reliable solution to obtain funds for insulin in the United States. Applying quantitative and qualitative methods is adequate to analyze online crowdfunding for costs of medications such as insulin. However, it is critical for people with diabetes to use resources other than online crowdfunding to access and obtain insulin owing to low success rates. Clinicians should routinely assess difficulty accessing or affording insulin, and federal health care policies should support lowering the cost of insulin.
... It will not be easy to curtail the risks and embed a fair regulatory framework into crowdfunding. There are too many forces at stake, including ambiguity in laws and policies and a lack of control, reporting and awareness (Young and Scheinberg 2017). At its worst, absentee governance could leave room for deception and crowdfunding fraud. ...
Article
Full-text available
Crowdfunding is emerging as an alternative form of funding for medical purposes, with capital being raised directly from a broader and more diverse audience of investors. In this paper, we have systematically researched and reviewed the literature on medical crowdfunding to determine how crowdfunding connects with the health care industry. The health care industry has been struggling to develop sustainable research and business models for economic systems and investors alike, especially in pharmaceuticals. The research results have revealed a wealth of evidence concerning the way crowdfunding is applied in real life. Patients and caregivers utilize web platform-based campaigns all over the world to fund their medical expenses, generally on a spot basis, using donation-based or even reward-based schemes, regardless of the health care system archetype (public, private insurance-based or hybrid). Academics have also focused on funding campaigns and the predictors of success (which range from social behaviour and environment to the basic demographics of the campaigners and their diseases) and on social and regulatory concerns, including heightened social inequality and stigma. While equity crowdfunding is disrupting the way many ventures/businesses seek capital in the market, our research indicates that there are no relevant or consistent data on the practice of medical equity crowdfunding in health care, apart from a few anecdotal cases.
... Meanwhile, the ostensible ease of starting a campaign means that even amid immense suffering "no one is permanently excluded from the game of entrepreneurship" (McNay, 2009, p. 58). The cruel implications of this were becoming clear to many, with scholarly research irrefutably confirming what had long been suspected: personal crisis crowdfunding is typically ineffective; requires burdensome confessions of suffering that harms privacy; reproduces existing inequalities around who is deemed "deserving"; and may well exacerbate these trends if we continue to passively accept crowdfunding as an alternative safety net to replace the ever-receding welfare state (see Barcelos, 2019;Berliner & Kenworthy, 2017;Igra, 2020;Kenworthy et al., 2020;Kneese, 2018;Lukk et al., 2018;Snyder et al., 2017;van Duynhoven et al., 2019;Young & Scheinberg, 2017). ...
Article
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GoFundMe, founded in 2010, has already profoundly impacted giving practices, introducing many laypersons to the empowering potentials and user‐friendly affordances of peer‐to‐peer fundraising. Overall, GoFundMe's extraordinary success as a for‐profit company in traditionally nonprofit charitable giving markets can be attributed to: normalizing their platform as the go‐to destination for people seeking help; tasking the beneficiaries themselves with crafting appeals for support; restricting forms of support to money; deferring responsibility to donors to assess the legitimacy of appeals; and dominating the market by acquiring competitors and pursuing growth wherever possible. No charity could plausibly adopt such an operating model and GoFundMe's lean, hands‐off, self‐policing approach has attracted sharp criticism over the years. Nonetheless, the company has not humbly reined in their ambition but expanded it even further. This paper outlines three broad phases through which GoFundMe has defended their capture of “the giving layer of the internet.” Initially, GoFundMe espoused ideals of utopian disruption and soteriological solutionism, selling their platform as a “take‐action button” and user‐friendly means of empowering everyday citizens to improve the lives of others. Later, after attracting more divisive causes and criticisms of its revenue model, GoFundMe adopted forms of reputational repair and attempted neutrality, insisting that their for‐profit platform could be accommodative to all worldviews and persons willing to embrace “positive precarization.” More recently, as “neutral” stances became untenable and fundraising success rates increasingly grim, GoFundMe pivoted toward strategies of state critique and civic capture. Specifically, GoFundMe have: more pointedly highlighted state failures; actively aligned themselves with social movements; shifted away from relying solely on peer‐to‐peer fundraising; and instead partnered more with established nonprofits. However, as GoFundMe's expansion inevitably means becoming entangled in sensitive political matters, the company's ambition to become the key intermediary in all charitable giving is facing acute challenges.
... Since social media can reach varied stakeholders and a wide audience in society, nongovernmental health organizations can use social media to mobilize social resources. Studies found that these organizations leveraged social media to advocate for change in public policies related to health issues such as HIV/AIDS [62] and mental health [63], raise funds for individual medical care and health-related research [64,65], and raise awareness and promote actions to address health problems such as medical equipment shortages [66]. Although a formal test of the effectiveness of using social media for social mobilization is lacking, the successful cases described in the articles show that social media provides a platform for nongovernmental health organizations to effectively mobilize resources and advocate for collective actions to achieve their goals [62]. ...
Article
Full-text available
Background Social media has been widely used for health-related purposes, especially during the COVID-19 pandemic. Previous reviews have summarized social media uses for a specific health purpose such as health interventions, health campaigns, medical education, and disease outbreak surveillance. The most recent comprehensive review of social media uses for health purposes, however, was conducted in 2013. A systematic review that covers various health purposes is needed to reveal the new usages and research gaps that emerge in recent years. Objective This study aimed to provide a systematic review of social media uses for health purposes that have been identified in previous studies. Methods The researchers searched for peer-reviewed journal articles published between 2006 and 2020 in 12 databases covering medicine, public health, and social science. After coding the articles in terms of publication year, journal area, country, method, social media platform, and social media use for health purposes, the researchers provided a review of social media use for health purposes identified in these articles. ResultsThis study summarized 10 social media uses for various health purposes by health institutions, health researchers and practitioners, and the public. Conclusions Social media can be used for various health purposes. Several new usages have emerged since 2013 including advancing health research and practice, social mobilization, and facilitating offline health-related services and events. Research gaps exist regarding advancing strategic use of social media based on audience segmentation, evaluating the impact of social media in health interventions, understanding the impact of health identity development, and addressing privacy concerns.
Article
Objectives: To examine the use of crowdfunding to pay for abortion services for individuals in the United States. Study design: Cross-sectional analysis of data abstracted from publicly available campaigns for abortion services on four major crowdfunding sites. Results: Among 92 crowdfunding campaigns, the median amount requested was $610 (IQR $500-$1,000), the median raised was $0 (IQR $0-$444), and 19 (21%) campaigns successfully reached their fundraising goal. Campaign success did not differ by state abortion policy, but campaigns written in third person or describing maternal/fetal diagnoses raised significantly more money. Conclusions: Although individuals use crowdfunding to finance abortion services, the success rate is low.
Article
Emerging modalities of communication have transformed the landscape of information dissemination particularly in the context of health care. Within oncology, stakeholders in all roles have formed both role-specific and multidisciplinary communities within the modalities of social media. Two platforms with particularly high adoption and penetration within oncologic practice for clinicians and general oncologic care as well as for patients and the community have been Facebook and Twitter. On both platforms, patients have come together to form disease-specific (or even mutation-specific) groups ripe with discussion on all aspects of their cancer, including disease and treatment symptoms, novel therapeutics, and clinical trial participation. Similarly, clinicians have united within professional communities to facilitate collaboration and community building in this rapidly changing medical practice landscape. Here, we investigate the current state of stakeholder engagement within social media and review strategies and platforms to maximize the impact of social media for patients and clinicians.
Article
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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.
Article
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.
Chapter
This chapter provides a systematic literature review on the extent of co-production in health, social care and public safety at the local and national level and its effectiveness. In particular, we explore in depth the potential and actual role of co-delivery in each sector with regard to the prevention, treatment and rehabilitation from social problems. Furthermore, we discuss the evidence of the effectiveness of co-commissioning, co-design and co-assessment in the three sectors.
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In the last decade, there has been a dramatic increase in the number of families resorting to internet-based public appeals to fund access to novel, highly expensive, or experimental therapies for rare disorders. Medical crowdfunding may provide a means to fund treatments or interventions, but it raises individual and societal ethical questions. In this review, we consider the ethical challenges crowdfunding poses in paediatric neurology, drawing on the example of gene therapy for spinal muscular atrophy. We discuss physician responsibilities, and how neurologists should respond to crowdfunding that they encounter in clinical practice. We also briefly consider actions that can be taken by clinicians, charities, and crowdfunding websites to reduce harms. The best way to mitigate these harms may be to target the high costs and restrictive criteria that limit access to many novel treatments, and to optimize treatment utility, for instance by newborn screening.
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Crowdfunding platforms direct millions of dollars annually to schools across the country, but the scholarly and policy communities have a limited understanding of their operations. In this paper we leverage data from DonorsChoose and the Common Core of Data to examine the characteristics of schools whose teachers do and do not submit projects to DonorsChoose, the subject areas and resource requests of these projects, and the characteristics of projects that achieve full funding. We find that teachers in schools serving disadvantaged student populations in the lowest-spending states are most likely to post projects on DonorsChoose. Despite accounting for a majority of submitted projects, math and reading projects are less likely to reach full funding than those in other subject areas.
Book
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This book CROWDFUNDING prepares management professionals who are growing as leaders in their respective field and who are specializing in Finance/Entrepreneur/ Banking /Venture Capitalism as well as other related specialization to understand finance eco-system development for funding process in a professional way can be benefitted out of this book since its entire work is on various situations which the leader faces in real life. The book also caters to the finance professionals and entrepreneurs who are willing to expand their business and have new startups.
Preprint
Full-text available
This book CROWDFUNDING prepares management professionals who are growing as leaders in their respective field and who are specializing in Finance/Entrepreneur/ Banking /Venture Capitalism as well as other related specialization to understand finance eco-system development for funding process in a professional way can be benefitted out of this book since its entire work is on various situations which the leader faces in real life. The book also caters to the finance professionals and enterepreneurs who are willing to expand their business and have new start ups.
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Recent advances in brain–computer interface technology to restore and rehabilitate neurologic function aim to enable persons with disabling neurologic conditions to communicate, interact with the environment, and achieve other key activities of daily living and personal goals. Here we evaluate the principles, benefits, challenges, and future directions of brain–computer interfaces in the context of neurorehabilitation. We then explore the clinical translation of these technologies and propose an approach to facilitate implementation of brain–computer interfaces for persons with neurologic disease.
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Americans facing large health-related expenses have increasingly turned to online crowdsourced funding for support, initiating 250,000 medical fundraisers on GoFundMe in 2018. Recent research indicates that these fundraisers yield inequitable outcomes, with White crowdfunding beneficiaries receiving higher levels of support than non-White beneficiaries. Researchers fear that racialized impressions of deservingness may be a driver of unequal returns in crowdfunding. However, rather than being a direct effect of interpersonal racism, differences in returns may be an indirect effect of the systemic racism that causes the social networks of Black and Hispanic Americans to have lower access to financial capital. This paper is the first to focus on how unequal access to monetary capital in networks of potential crowdfunding donors drives unequal returns for beneficiaries. I analyze a geographically stratified sample of 2,618 GoFundMe campaigns coded for perceived race and ethnicity of the beneficiary. I estimate donor financial capacity for each campaign based on the geography of Facebook friend networks and the most likely racial and ethnic makeup of the donor pool, based on donor surnames. I show that variations in the estimated income of potential donors can account for much of the deficit in returns. Thus, even in the absence of interpersonal discrimination, crowdfunding is unlikely to yield equitable outcomes given the current distribution of financial resources in the United States.
Chapter
One must at first acknowledge the rapid growth of the crowdfunding market over the recent years, both within the United States and worldwide. With the conduct of diverse crowdfunding activities, various complex legal issues arose. While the laws and regulations in the United States endeavoured to keep pace, at both state and federal levels, with the diversity and evolution of crowdfunding businesses, there is at the date of this report no comprehensive legal framework encompassing crowdfunding as a whole. This report thus aims to shed some light on the existing legal framework in force in the United States and on some of the complex issues raised by crowdfunding activities.
Chapter
Medical crowdfunding is booming in recent years, especially as patients with little or no health insurance turn to appeal for help online in covering medical costs. However, most of medical crowdfunding campaigns fail to reach their goals, and we rarely know the reason. Therefore, this study seeks to explore what determines users’ donation behavior in medical crowdfunding. Drawing on the S-O-R model, this study explores how certain stimulus (altruism, trust, and strength of social relationships) induce individuals’ cognitive empathy and emotional empathy (organism), which in turn affect their donation behavior (response) in medical crowdfunding. Data was collect from 142 respondents and analyzed with SmartPLS 3.2.9. Findings indicate that individuals’ donation behavior is positively influenced by their cognitive empathy and emotional empathy, which are positively related to altruism, trust, and strength of social relationships. The potential theoretical and practical contributions are discussed.
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Campaigns for personal health expenses make up the largest and fastest-growing segment of donation-based crowdfunding. Set against the backdrop of retrenchment and disinvestment in public healthcare systems across the global North, health-related crowdfunding is a way to navigate increasingly marketised systems of social reproduction. Despite high profile success stories, campaigns vary significantly in their ability to capture the hearts, and ultimately wallets, of donors. While existing analyses of online campaign pages offer some insight into the marketing of healthcare needs, far less is known about practices and experiences of crowdfunding platform users, including campaigners. Bringing literature on crowdfunding together with accounts of the marketisation of care, our paper asks: how do campaigners work to secure crowdfunded healthcare? Through the accounts of 15 people campaigning on behalf of family or friends in Aotearoa New Zealand, we show how attempts to appeal to donors depend on campaigners’ abilities to ‘market’ illness and need in ways that resonate with the crowd. We have two main foci. First, we examine the responsibility and responsibilisation of campaigners to engage and perform accountability to crowdfunders. Second, we show how campaigners mobilise recipients’ traits of deservingness and other culturally favoured personal qualities to appeal to the crowd's perceived predilections. In sum, the paper demonstrates how the use of crowdfunding is both necessitated by the marketisation of healthcare while simultaneously exerting its own form of market discipline.
Article
Background Medical crowdfunding provides opportunities for individuals who lack financial resources to access the health services that they need. Despite the popularity of medical crowdfunding, the current understanding of the success of medical crowdfunding campaigns is fragmented and inadequate. Objective We aimed to comprehensively investigate which factors lead to the success of medical crowdfunding campaigns. Methods A search was conducted in PubMed, PsycINFO, Web of Science, ACM Digital Library, and ScienceDirect from 2010 to June 2020. Papers directly and indirectly related to the success of medical crowdfunding campaigns were included. Two reviewers independently extracted information on the success of medical crowdfunding campaigns. Results Our search yielded 441 articles, of which 13 met the inclusion criteria. Medical crowdfunding is increasingly attracting academic attention, and most studies leverage text analysis as their research methods; however, there is a lack of consensus on the definition of medical crowdfunding among researchers. Four categories of factors that affect the success of medical crowdfunding were identified: platforms, raisers, donors, and campaigns. Conclusions Although some limitations exist in our systematic review, our study captured and mapped literatures of the success of medical crowdfunding campaigns systematically, which can be used as the basis for future research on this topic.
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A 28-year-old indigenous Guatemalan woman presented with 7 months of progressive weakness and numerous dermatological findings. She initially sought care within the free government-run health system and was treated with oral steroids for presumed dermatomyositis. Her symptoms progressed, including severe dysphagia, hypophonia and weakness preventing sitting. She was lost to follow-up in the public system due to financial and cultural barriers. A non-governmental organisation tailored to the needs of Maya patients provided home intravenous pulse dose methylprednisolone in the absence of first-line biologicals. With longitudinal home-based care, she achieved symptom free recovery. The rising burden of chronic non-communicable diseases highlights shortcomings in health systems evident in this case, including lack of provider capacity, limited infrastructure to test for and treat rare diseases and poor continuity of care. We provide potential solutions to help care delivery in low-resource settings adapt to the demans of chronic disease control with particular attention to social determinants of health.
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The international transplant community portrays organ trade as a growing and serious crime involving large numbers of traveling patients who purchase organs. We present a systematic review about the published number of patients that purchased organs. With this information we discuss whether the scientific literature reflects a substantial practice of organ purchase. Between 2000 and 2015, 86 studies were published. Seventy-six of these presented patients who traveled and 42 stated that the transplants were commercial. Only 11 studies reported that patients paid and 8 described to what or whom patients paid. In total, over a period of 42 years, 6002 patients have been reported to travel for transplantation. Of these, only 1238 were reported to have paid for their transplants. An additional unknown number of patients paid for their transplants in their native countries. We conclude that the scientific literature does not reflect a large number of patients buying organs. Organ purchases were more often assumed than determined. A reporting code for transplant professionals to report organ trafficking networks is a potential strategy to collect and quantify cases. This article is protected by copyright. All rights reserved.
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In this new book by the award-winning author of Just Healthcare, Norman Daniels develops a comprehensive theory of justice for health that answers three key questions: What is the special moral importance of health? When are health inequalities unjust? How can we meet health needs fairly when we cannot meet them all? Daniels’ theory has implications for national and global health policy: Can we meet health needs fairly in ageing societies? Or protect health in the workplace while respecting individual liberty? Or meet professional obligations and obligations of justice without conflict?
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The insufficient supply of transplantable kidneys from traditional donors after neurologic determination of death (1, 2) has prompted increasing use of kidneys from the following types of donors: donors after circulatory determination of death (3), donors with risk factors for harboring transmittable infections (4), expanded-criteria donors (that is, those with risk factors, such as older age or hypertension) (5), and living donors related or unrelated to the recipient (6, 7). Unfortunately, despite these efforts to increase the pool of kidneys, the median time to transplantation, number of patients on the waiting list, and number of patients who die while waiting for an organ continue to increase (8). Thus, for the past decade, ethicists and members of the transplant community have debated the approach of paying healthy persons to become living donors (9 –17). International black markets in organs are almost universally condemned because safeguards to protect donors are largely absent, brokers rather than donors may commandeer most of the payments, and such systems almost invariably entail wealthy travelers purchasing organs from poor natives (18, 19). By contrast, a less well-resolved ethical debate regards a regulated national market for kidneys in which donors receive payment according to a fixed and transparent schedule, organs are allocated according to standard criteria, and standards are set and monitored to ensure appropriate longitudinal care for donors (14, 20). The potential benefits of such a regulated market are clear. Compared with lifelong dialysis, kidney transplantation from deceased donors substantially increases quality-adjusted life expectancy and is cost-saving (21, 22). Because kidney transplantation from living donors produces greater benefits (6), particularly when done before recipients initiate dialysis (7), even large payments (for example, $100 000) are estimated to be a cost-effective way to increase the supply of kidneys available for transplantation (8, 23). However, at least 3 concerns exist with regulated payments for living kidney donation. First, payments may represent undue inducements—payments might alter a person’s perception of the risks associated with donation, thereby preventing a fully informed decision to sell a kidney. Second, payments may represent unjust inducements—payments might preferentially influence lower-income persons, thereby creating a market in which organs are acquired from poor persons and provided to those with sufficient financial and social resources to be listed for transplantation. Third, payments may dissuade altruistic donation or cause potential altruistic donors to request payment. In this study, we did not aim to assess the conceptual strengths and weaknesses of these concerns, but rather we used empirical methods to determine the extent to which these concerns might manifest if a regulated market for kidneys were established in the United States.
Article
Introduction: Growing pressures to ration intensive care unit beds and services pose novel challenges to clinicians. Whereas the question of how to allocate scarce intensive care unit resources has received much attention, the question of whether to disclose these decisions to patients and surrogates has not been explored. Key considerations: We explore how considerations of professionalism, dual agency, patients' and surrogates' preferences, beneficence, and healthcare efficiency and efficacy influence the propriety of disclosing rationing decisions in the intensive care unit. Conclusions: There are compelling conceptual reasons to support a policy of routine disclosure. Systematic disclosure of prevailing intensive care unit norms for making allocation decisions, and of at least the most consequential specific decisions, can promote transparent, professional, and effective healthcare delivery. However, many empiric questions about how best to structure and implement disclosure processes remain to be answered. Specifically, research is needed to determine how best to operationalize disclosure processes so as to maximize prospective benefits to patients and surrogates and minimize burdens on clinicians and intensive care units.
How crowdsourcing and crowdfunding are redefining innovation management
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When to turn down that GoFundMe medical plea. USA Today
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