Crowdfunding

众筹
  • 文章类型: Journal Article
    背景:补充和替代(CAM)癌症治疗通常很昂贵,并且不在保险范围内。因此,许多人转向众筹来获得这种治疗。
    目的:这项研究的目的是通过专门研究支持蒂华纳CAM癌症治疗的众筹活动,来确定在国外寻求CAM治疗的癌症患者的理由。墨西哥。
    方法:我们刮了GoFundMe.com和GiveSendGo.com众筹平台,以开展参考蒂华纳CAM癌症诊所的活动,始于2022年1月1日至2023年2月28日。作者创建了一个编码框架,以确定在蒂华纳寻求CAM治疗的理由。要补充市场活动元数据,我们编码了受益人的癌症阶段,type,年龄,寻求特定治疗,受益人是否死了,性别,和种族。
    结果:患者在蒂华纳寻求CAM癌症治疗,因为(1)治疗提供了最大的疗效(29.9%);(2)国内提供的治疗不是治愈的(23.2%);(3)诊所治疗整个人,并解决了人的精神层面(20.1%);(4)治疗是无毒的,自然,或侵入性较小(18.2%);(5)诊所提供最新技术(8.5%)。运动筹集了5,275,268.37美元,大多数运动受益者是妇女(69.7%)或白人(71.1%)。
    结论:这些运动传播了关于CAM治疗可能疗效的有问题的错误信息,向蒂华纳的CAM诊所提供资金和代言,让许多活动家缺乏支付CAM治疗所需的资金,同时花费受益人和他们所爱的人的时间,隐私,和尊严。这项研究证实了蒂华纳,墨西哥,是CAM癌症治疗的一个非常受欢迎的目的地。
    BACKGROUND: Complementary and alternative (CAM) cancer treatment is often expensive and not covered by insurance. As a result, many people turn to crowdfunding to access this treatment.
    OBJECTIVE: The aim of this study is to identify the rationales of patients with cancer seeking CAM treatment abroad by looking specifically at crowdfunding campaigns to support CAM cancer treatment in Tijuana, Mexico.
    METHODS: We scraped the GoFundMe.com and GiveSendGo.com crowdfunding platforms for campaigns referencing CAM cancer clinics in Tijuana, initiated between January 1, 2022, and February 28, 2023. The authors created a coding framework to identify rationales for seeking CAM treatment in Tijuana. To supplement campaign metadata, we coded the beneficiary\'s cancer stage, type, age, specific treatment sought, whether the beneficiary died, gender, and race.
    RESULTS: Patients sought CAM cancer treatment in Tijuana because the (1) treatment offers the greatest efficacy (29.9%); (2) treatment offered domestically was not curative (23.2%); (3) the clinic treats the whole person, and addresses the spiritual dimension of the person (20.1%); (4) treatments are nontoxic, natural, or less invasive (18.2%); and (5) clinic offers the newest technology (8.5%). Campaigns raised US $5,275,268.37 and most campaign beneficiaries were women (69.7%) or White individuals (71.1%).
    CONCLUSIONS: These campaigns spread problematic misinformation about the likely efficacy of CAM treatments, funnel money and endorsements to CAM clinics in Tijuana, and leave many campaigners short of the money needed to pay for CAM treatments while costing beneficiaries and their loved one\'s time, privacy, and dignity. This study affirms that Tijuana, Mexico, is a very popular destination for CAM cancer treatment.
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  • 文章类型: Journal Article
    高等教育机构,包括医学院,越来越依赖筹款来弥补资金缺口并支持他们的任务。本文提出了一种关于筹款中数据驱动策略的观点,概述了有效规划的4步方法,同时考虑伦理影响。它概述了一个四步的方法来创建一个有效的,端到端,数据驱动的筹款计划,强调数据收集的关键阶段,数据分析,目标确立,并有针对性地制定战略。通过利用内部和外部数据,学校可以创建量身定制的外展计划,与潜在的捐助者产生共鸣。然而,筹款过程必须基于道德考虑。道德挑战,特别是在与感恩的医疗患者筹款方面,必须采取透明和诚实的做法,优先考虑捐赠者和受益者的权利,并维护公众信任。本文提出了关于数据驱动策略在医学教育筹款中的关键作用的观点。它强调将全面的数据分析与道德考虑相结合,以加强医学院的筹款工作。通过将数据分析与筹款最佳实践相结合,并确保道德实践,医疗机构可以确保财政支持和培育持久,与他们的捐助社区建立基于信任的关系。
    UNASSIGNED: Higher education institutions, including medical schools, increasingly rely on fundraising to bridge funding gaps and support their missions. This paper presents a viewpoint on data-driven strategies in fundraising, outlining a 4-step approach for effective planning while considering ethical implications. It outlines a 4-step approach to creating an effective, end-to-end, data-driven fundraising plan, emphasizing the crucial stages of data collection, data analysis, goal establishment, and targeted strategy formulation. By leveraging internal and external data, schools can create tailored outreach initiatives that resonate with potential donors. However, the fundraising process must be grounded in ethical considerations. Ethical challenges, particularly in fundraising with grateful medical patients, necessitate transparent and honest practices prioritizing donors\' and beneficiaries\' rights and safeguarding public trust. This paper presents a viewpoint on the critical role of data-driven strategies in fundraising for medical education. It emphasizes integrating comprehensive data analysis with ethical considerations to enhance fundraising efforts in medical schools. By integrating data analytics with fundraising best practices and ensuring ethical practice, medical institutions can ensure financial support and foster enduring, trust-based relationships with their donor communities.
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  • 文章类型: Journal Article
    健康教育游戏使与健康相关的任务变得愉快和互动,鼓励用户参与。企业家和健康教育工作者可以利用在线众筹平台,比如Kickstarter,将他们的创新理念转化为资助项目。
    本研究的重点是Kickstarter上的健康教育游戏计划。通过在线用户调查,它旨在了解用户的看法,并评估可能影响此类众筹计划成功的8个不同组件的重要性。
    共有75名参与者使用8个维度评估游戏:游戏规则,学习目标,叙事,内容组织,动机,交互性,技能建设,评估和反馈。调查数据采用描述性统计分析,探索性因素分析,Wilcoxon-Mann-Whitney检验,和多变量分析。
    探索性数据分析表明,在8个维度中,技能建设,内容组织,和交互性是与众筹健康教育游戏最密切相关的排名最高的维度。从探索性因素分析中可以将8个维度分为3类:游戏内容-,说明-,和游戏设计相关的组件。进一步的统计分析证实了这些维度与健康教育游戏成功众筹之间的相关性。
    这项实证分析确定了游戏提案设计的关键因素,这些因素可以增加获得众筹支持的可能性。
    UNASSIGNED: Health education games make health-related tasks enjoyable and interactive, thereby encouraging user participation. Entrepreneurs and health educators can leverage online crowdfunding platforms, such as Kickstarter, to transform their innovative ideas into funded projects.
    UNASSIGNED: This research focuses on health education game initiatives on Kickstarter. Through an online user survey, it aims to understand user perceptions and evaluate the significance of 8 distinct components that may influence the success of such crowdfunding initiatives.
    UNASSIGNED: A total of 75 participants evaluated games using 8 dimensions: game rules, learning objectives, narrative, content organization, motivation, interactivity, skill building, and assessment and feedback. The survey data were analyzed using descriptive statistical analysis, exploratory factor analysis, the Wilcoxon-Mann-Whitney test, and multivariate analysis.
    UNASSIGNED: Exploratory data analysis showed that, among the 8 dimensions, skill building, content organization, and interactivity were the top-ranking dimensions most closely associated with crowdfunding health education game. The 8 dimensions can be grouped into 3 categories from the exploratory factor analysis: game content-, instruction-, and game design-related components. Further statistical analysis confirmed the correlation between these dimensions with the successful crowdfunding of health education games.
    UNASSIGNED: This empirical analysis identified critical factors for game proposal design that can increase the likelihood of securing crowdfunding support.
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  • 文章类型: Journal Article
    背景:新兴文献表明,LGBTQ+癌症幸存者比非LGBTQ+癌症幸存者更有可能经历经济负担。然而,LGBTQ+癌症幸存者对众筹等成本应对行为的经验研究不足。
    方法:我们旨在通过结合社区参与和基于技术的方法来评估LGBTQ在癌症众筹中的不平等。众筹活动是从GoFundMe网上抓取的,并使用术语词典分类为癌症相关和LGBTQ+或非LGBTQ+。双变量分析和广义线性模型用于评估LGBTQ状态提高的总目标量的差异效应。分层模型由在线覆盖和LGBTQ+国家政策的包容性运行。
    结果:2022年11月,从GoFundMe网上收集了N=188,342个活跃的癌症相关众筹活动,其中N=535个是LGBTQ+,范围从2014年到2022年。在最近竞选活动的多变量模型(2019-2022年)中,LGBTQ+活动筹集的资金比非LGBTQ+活动少1608美元(95%CI:-2139,-1077)。低LGBTQ+运动(26-45个捐助者),中度(46-87个捐助者),和高(88-240个捐助者)在线达到平均1152美元(95%CI:-1589美元,-716美元),1050美元(95%CI:-1737美元,-364美元),和2655美元(95%CI:-4312美元,-998美元)分别比非LGBTQ+广告系列少。当按LGBTQ的包容性分层时,具有反LGBTQ政策/缺乏公平政策的州平均筹集了1910美元(95%CI:-2640,-1182),比来自同一州的非LGBTQ运动少。
    结论:我们的发现揭示了LGBTQ+在癌症相关众筹中的不平等,这表明,与非LGBTQ+癌症幸存者相比,LGBTQ+癌症幸存者可能不太能够通过众筹解决经济负担,这可能会扩大现有的经济不平等。
    BACKGROUND: Emerging literature suggests that LGBTQ+ cancer survivors are more likely to experience financial burden than non-LGBTQ+ survivors. However, LGBTQ+ cancer survivors experience with cost-coping behaviors such as crowdfunding is understudied.
    METHODS: We aimed to assess LGBTQ+ inequity in cancer crowdfunding by combining community-engaged and technology-based methods. Crowdfunding campaigns were web-scraped from GoFundMe and classified as cancer-related and LGBTQ+ or non-LGBTQ+ using term dictionaries. Bivariate analyses and generalized linear models were used to assess differential effects in total goal amount raised by LGBTQ+ status. Stratified models were run by online reach and LGBTQ+ inclusivity of state policy.
    RESULTS: A total of N = 188,342 active cancer-related crowdfunding campaigns were web-scraped from GoFundMe in November 2022, of which N = 535 were LGBTQ+ and ranged from 2014 to 2022. In multivariable models of recent campaigns (2019-2022), LGBTQ+ campaigns raised $1608 (95% CI: -2139, -1077) less than non-LGBTQ+ campaigns. LGBTQ+ campaigns with low (26-45 donors), moderate (46-87 donors), and high (88-240 donors) online reach raised on average $1152 (95% CI: -$1589, -$716), $1050 (95% CI: -$1737, -$364), and $2655 (95% CI: -$4312, -$998) less than non-LGBTQ+ campaigns respectively. When stratified by LGBTQ+ inclusivity of state level policy states with anti-LGBTQ+ policy/lacking equitable policy raised on average $1910 (95% CI: -2640, -1182) less than non-LGBTQ+ campaigns from the same states.
    CONCLUSIONS: Our findings revealed LGBTQ+ inequity in cancer-related crowdfunding, suggesting that LGBTQ+ cancer survivors may be less able to address financial burden via crowdfunding in comparison to non-LGBTQ+ cancer survivors-potentially widening existing economic inequities.
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  • 文章类型: Journal Article
    本研究对现有的众筹文献进行了文献计量和科学计量检查。该分析包含来自Scopus数据库的总共1156篇文章。数据使用文献计量技术呈现,采用R-studio和VOS查看器软件。进行了科学计量分析,以确定研究主题的发现和模式,当前和未来的研究方向,影响,共现,共同引用,以及影响和协作的趋势。从2010年到2023年,关于众筹的文献表现出了显著的增长。在2020年至2023年之间,与众筹有关的出版物数量经历了大幅增长。突出的研究趋势和合作趋势包括众筹和资源动员的各个方面,包括众筹,筹款,社会资本,点对点贷款,风险投资,和众筹的成功。此外,本研究在对现有文献进行全面考察的基础上,为研究提供了更大的范围。我们的研究结果有可能为即将到来的学者提供有价值的见解,Corporations,和监管机构寻求理解众筹研究领域的当前模式和预期进展。
    This study offers a bibliometric and Scientometric examination of the existing body of literature on crowdfunding. The analysis incorporates a total of 1156 articles from the Scopus database. The data is presented using the bibliometric technique, employing R-studio and VOS viewer software. A Scientometric analysis was undertaken to ascertain the discoveries and patterns of research themes, current and future research orientations, impact, co-occurrence, co-citations, as well as trends in impact and collaboration. The literature on crowdfunding has exhibited significant growth from 2010 to 2023. The number of publications pertaining to crowdfunding has experienced substantial growth between the years 2020 and 2023. The highlighted research trends and collaboration trends encompass various aspects of crowdfunding and resource mobilization, including crowdfunding, fundraising, social capital, peer-to-peer lending, venture capital, and crowdfunding success. Additionally, this study offers an expanded scope for the study based on a comprehensive examination of existing literature. The outcomes of our study have the potential to offer valuable insights for forthcoming scholars, corporations, and regulatory bodies seeking to comprehend the present patterns and anticipated advancements in the field of crowdfunding research.
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  • 文章类型: Journal Article
    背景:近年来,人们越来越担心众筹中的偏见;然而,实证研究仍然有限,特别是在医疗众筹的背景下。这项研究解决了医疗众筹中种族差异这一紧迫的问题,特别关注GoFundMe平台上的癌症众筹。
    目的:本研究旨在使用平均捐赠金额调查癌症众筹中的种族差异,捐款数量,和筹款活动的成功作为结果。
    方法:从美国104,809个活动的大量数据集中得出,我们使用DeepFace面部识别技术来确定种族身份,并使用回归模型来检查众筹绩效中的种族因素。我们还研究了白人居民比例对众筹偏见的调节作用,并使用2尾t检验来衡量种族匿名对众筹成功的影响。由于样本量大,我们将显著性的截止值设定为P<.001。
    结果:在回归和补充分析中,筹款人的种族身份显著预测了平均捐款(P<.001),这表明内隐偏见可能在捐赠者行为中起作用。性别(P=.04)和活动描述长度(P=.62)并不能显着预测平均捐赠金额。筹款人的种族与捐赠数量没有显着相关(P=0.42)。癌症众筹活动的成功率,尽管总体上较低(11.77%),与筹款人的种族有显著的关联(P<.001)。在控制了筹款人性别的协变量之后,募捐年龄,当地白色比例,活动描述的长度,和筹款目标,白人的平均捐赠金额比黑人高17.68%。此外,未披露种族信息的运动显示,平均捐赠金额(3.92%)略高于有色人种。此外,发现募捐者居住县的种族构成具有影响力(P<.001);白人居民比例较高的县在众筹结果中表现出减少的种族差异。
    结论:这项研究有助于更深入地了解癌症众筹中的种族差异。它强调了种族认同的影响,地理环境,以及捐赠者行为中潜在的内隐偏见。随着基于Web的平台的发展,解决种族不平等和促进卫生保健筹资公平仍然是关键目标。这项研究的见解提出了诸如保持种族匿名性和确保竞选活动提供有力证据的策略。此外,为了消除促使个人寻求众筹支持的财务困境,更广泛的社会变革是必要的。
    In recent years, there has been growing concern about prejudice in crowdfunding; however, empirical research remains limited, particularly in the context of medical crowdfunding. This study addresses the pressing issue of racial disparities in medical crowdfunding, with a specific focus on cancer crowdfunding on the GoFundMe platform.
    This study aims to investigate racial disparities in cancer crowdfunding using average donation amount, number of donations, and success of the fundraising campaign as outcomes.
    Drawing from a substantial data set of 104,809 campaigns in the United States, we used DeepFace facial recognition technology to determine racial identities and used regression models to examine racial factors in crowdfunding performance. We also examined the moderating effect of the proportion of White residents on crowdfunding bias and used 2-tailed t tests to measure the influence of racial anonymity on crowdfunding success. Owing to the large sample size, we set the cutoff for significance at P<.001.
    In the regression and supplementary analyses, the racial identity of the fundraiser significantly predicted average donations (P<.001), indicating that implicit bias may play a role in donor behavior. Gender (P=.04) and campaign description length (P=.62) did not significantly predict the average donation amounts. The race of the fundraiser was not significantly associated with the number of donations (P=.42). The success rate of cancer crowdfunding campaigns, although generally low (11.77%), showed a significant association with the race of the fundraiser (P<.001). After controlling for the covariates of the fundraiser gender, fundraiser age, local White proportion, length of campaign description, and fundraising goal, the average donation amount to White individuals was 17.68% higher than for Black individuals. Moreover, campaigns that did not disclose racial information demonstrated a marginally higher average donation amount (3.92%) than those identified as persons of color. Furthermore, the racial composition of the fundraiser\'s county of residence was found to exert influence (P<.001); counties with a higher proportion of White residents exhibited reduced racial disparities in crowdfunding outcomes.
    This study contributes to a deeper understanding of racial disparities in cancer crowdfunding. It highlights the impact of racial identity, geographic context, and the potential for implicit bias in donor behavior. As web-based platforms evolve, addressing racial inequality and promoting fairness in health care financing remain critical goals. Insights from this research suggest strategies such as maintaining racial anonymity and ensuring that campaigns provide strong evidence of deservingness. Moreover, broader societal changes are necessary to eliminate the financial distress that drives individuals to seek crowdfunding support.
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  • 文章类型: Systematic Review
    背景:被诊断患有严重慢性疾病的人及其看护者经历了多种类型的财务成本,这些成本使他们的收入紧张并产生财务困境。许多人转向医疗众筹(MCF),以减轻这些成本对他们的健康和生活质量的危害。
    目的:本范围综述旨在总结被诊断患有严重慢性病的人的MCF研究,包括研究设计和方法;研究实践的负责任行为;以及与压力相关的研究重点,压力评估,和应对过程。
    方法:本综述按照PRISMA(系统评价和Meta分析的首选报告项目)和PRISMA-ScR(系统评价和Meta分析扩展的首选报告项目)指南进行。在世界银行指定为高收入国家进行了符合条件的研究,重点是被诊断患有严重慢性病的受益人。对纳入研究的结果进行了总结,因为它们与概念框架中的关键概念相关,这些概念框架源于既定的压力,评估,儿科肿瘤学金融毒性的应对框架和概念模型。
    结果:总体而言,26项研究有资格纳入审查。主要调查结果包括缺乏定性和定量方法的整合,以及对负责任的研究实践行为的报告不一致。纳入的研究侧重于导致经济负担的财务压力源,例如自付医疗费用,基本生活费用,医疗差旅费,以及由于与疾病有关的工作中断而导致的收入损失。很少有研究将压力评估视为威胁或可用财政资源的充足性。当提到,与COVID-19大流行期间全球金融斗争或社交网络成员捐赠资金能力有关的评估。MCF的后果包括获得3种形式的社会支持(有形,信息性,和情感),隐私丢失,尴尬,以及科学上不支持的信息的传播。研究发现,朋友和家人倾向于管理MCF活动。尽管大多数研究(21/26,81%)关注的是货币结果,少数人(5/26,19%)集中在人们对MCF的体验上。
    结论:确定的方法学差距突出了需要更可靠和可重复的方法来使用公共MCF平台上可用的大量数据。定量和定性方法的整合将允许对MCF经验进行细微差别的探索。有必要更加一致地制定战略,以促进负责任的研究行为,以最大程度地减少易受伤害人群的风险,并对失去隐私表示担忧。最后,对MCF的意外后果的审查对于未来干预措施的发展至关重要,以优化现有支持,同时提供所需的支持,金融和非金融,缺乏的。
    Persons diagnosed with serious chronic illnesses and their caretakers experience multiple types of financial costs that strain their income and generate financial distress. Many turn to medical crowdfunding (MCF) to mitigate the harms of these costs on their health and quality of life.
    This scoping review aims to summarize the research on MCF for persons diagnosed with serious chronic illness regarding study designs and methods; the responsible conduct of research practices; and study foci as they relate to stress, stress appraisals, and the coping processes.
    This review was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. Eligible studies were conducted in countries designated as high income by the World Bank and focused on beneficiaries diagnosed with serious chronic illness. The findings of the included studies were summarized as they related to the key concepts in a conceptual framework derived from an established stress, appraisal, and coping framework and a conceptual model of financial toxicity in pediatric oncology.
    Overall, 26 studies were eligible for inclusion in the review. The main findings included a lack of integration of qualitative and quantitative approaches and the inconsistent reporting of the responsible conduct of research practices. The included studies focused on financial stressors that contributed to financial burden, such as out-of-pocket payments of medical bills, basic living expenses, medical travel expenses, and lost income owing to illness-related work disruptions. Few studies addressed stress appraisals as threatening or the adequacy of available financial resources. When mentioned, appraisals related to the global financial struggle during the COVID-19 pandemic or the capacity of social network members to donate funds. The consequences of MCF included the receipt of 3 forms of social support (tangible, informational, and emotional), privacy loss, embarrassment, and the propagation of scientifically unsupported information. Studies found that friends and family tended to manage MCF campaigns. Although most of the studies (21/26, 81%) focused on monetary outcomes, a few (5/26, 19%) concentrated on peoples\' experiences with MCF.
    The identified methodological gaps highlight the need for more robust and reproducible approaches to using the copious data available on public MCF platforms. The integration of quantitative and qualitative methods will allow for nuanced explorations of the MCF experience. A more consistent elaboration of strategies to promote the responsible conduct of research is warranted to minimize risk to populations that are vulnerable and express concerns regarding the loss of privacy. Finally, an examination of the unanticipated consequences of MCF is critical for the development of future interventions to optimize existing supports while providing needed supports, financial and nonfinancial, that are lacking.
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  • 文章类型: Journal Article
    背景:癌症幸存者经常经历癌症相关的经济负担。女同性恋的程度,同性恋,双性恋,变性人,酷儿,此外,(LGBTQ+)人群经历过与癌症相关的成本应对行为,比如众筹,这在很大程度上是未知的。由于缺乏性取向和性别认同数据收集和社会污名化。网络抓取以前曾被用来评估在线众筹中的不平等现象,但是这些方法本身并不能充分吸引面临不平等的人群。
    目的:我们描述了整合基于技术和社区参与方法的方法学过程,以通过在线众筹探索LGBTQ个体中癌症的经济负担。
    方法:以LGBTQ+社区为中心,我们遵循社区参与指南,成立了LGBTQ+癌症幸存者研究咨询委员会(SAB),看护者,以及参与研究每一步的专业人士。通过每季度SAB会议出席率和参与度调查来跟踪SAB成员参与度。然后,我们使用网络抓取方法提取了一组在线众筹活动的数据集。研究小组遵循基于技术和社区参与的集成过程,以开发和完善术语词典进行分析。开发和完善了术语词典,以识别与癌症和LGBTQ相关的众筹活动。
    结果:根据会议出勤率指标,咨询委员会的参与度很高,会议参与,和匿名董事会反馈。与SAB合作,术语字典是反复编辑和完善的。LGBTQ+术语词典是由研究小组开发的,而癌症术语词典是从现有词典中提炼出来的。顾问委员会和分析团队成员根据术语字典手动编码,并进行质量检查,直到使用成对协议实现对正确分类的高置信度。通过手动编码和质量检查的每个阶段,与单独的分析团队相比,咨询委员会确定了更多的错误分类活动。在完善LGBTQ+术语词典时,分析团队发现11.8%的错误分类,而SAB发现20.7%的错误分类.一旦每个术语词典定稿,LGBTQ+术语词典达成了95%的成对协议,而癌症术语字典导致89.2%的成对一致性。
    结论:通过整合社区参与和基于技术的方法开发的分类工具更准确,因为以公平为基础的方法将LGBTQ+的声音和他们的生活经验居中。该范例表明,整合社区参与和基于技术的方法来研究不平等现象是非常可行的,并且可以应用于LGBTQ财务负担研究之外。
    BACKGROUND: Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities.
    OBJECTIVE: We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding.
    METHODS: To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related.
    RESULTS: Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement.
    CONCLUSIONS: The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research.
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  • 文章类型: Journal Article
    背景:由于医疗保健费用的上涨,患者寻求解决医疗费用的替代方法。特别是,移植患者有复杂而昂贵的医疗需求,包括皮肤癌监测,这些需求可能无法完全由保险覆盖。一种这样的医疗费用融资方法是通过基于网络的平台进行众包,尤其是GoFundMe。
    目的:先前的工作确定了与GoFundMe活动“为皮肤病筹款成功”相关的因素。我们试图在移植受者中描述这些因素,以筹集用于支付皮肤癌相关费用的资金。这些因素包括人口统计,竞选特征,和主观主题。
    方法:从2022年1月到4月,我们使用以下根据作者共识选择的搜索词分析了GoFundMe活动:“移植皮肤癌,“\”移植基底细胞,\“\”移植鳞状,移植黑色素瘤,“和”皮肤科医生移植。“人口统计学数据是根据广告系列文本编码的,或者是根据作者的共识进行主观编码的。广告系列由2位独立编码器完整阅读,并与多达3个不同的主题相关联。进行线性回归以检查与成功相关的质量,这被定义为在控制竞选目标时筹集的资金。Logistic回归用于检查与非常成功的竞选活动相关的质量,定义为筹集资金超过IQR1.5倍的人。
    结果:在82个广告系列中,我们确定了与筹款活动成功相关的几个因素。在传染病治疗期间出现并发症的患者,那些接受胰腺移植的人,或者那些死于疾病的人筹集了更多的钱。61岁以上的患者筹集的资金明显减少。非常成功的运动(>20,177美元)与强调因疾病而残疾的运动者有关,那些不愿寻求帮助的人,或因疾病而死亡的人。
    结论:人口统计学和主题因素与移植患者皮肤癌相关的筹款成功有关,偏爱那些年轻的人,在更极端的情况下,并且似乎不愿寻求帮助;这些发现与以前的研究结果一致。此外,移植患者有复杂而昂贵的皮肤病学需求,可能无法完全由保险涵盖,这反映在他们的GoFundMe活动中。最常提到的筹款原因包括生活费用或收入损失,保险不足或没有保险,和报废成本。我们的发现可能会告知移植患者如何最大限度地提高他们的运动的成功,并突出皮肤癌相关费用的医疗保健覆盖方面的差距。限制包括由于数据抽象过程而导致错误分类的可能性,以及将数据收集限制在GoFundMe上提供的筹款人,而不包括其他网站上的筹款人。进一步的研究应该调查众筹的伦理影响,这个病人群体的经济需求,以及改善接受移植的患者接受常规皮肤癌监测的潜在方法。
    BACKGROUND: Due to rising health care costs, patients have sought alternative ways of addressing medical expenses. In particular, transplant patients have complex and expensive medical needs-including skin cancer surveillance-that may not be fully covered by insurance. One such method of financing medical costs is by crowdsourcing through web-based platforms, most notably GoFundMe.
    OBJECTIVE: Previous work identified factors associated with GoFundMe campaigns\' fundraising success for dermatologic diseases. We sought to characterize these factors in transplant recipients\' campaigns for funds raised for covering skin cancer-related costs. These factors include demographics, campaign traits, and subjective themes.
    METHODS: From January to April 2022, we analyzed GoFundMe campaigns using the following search terms chosen on the basis of author consensus: \"transplant skin cancer,\" \"transplant basal cell,\" \"transplant squamous,\" \"transplant melanoma,\" and \"dermatologist transplant.\" Demographic data were coded from campaign text or subjectively coded based on author consensus. Campaigns were read completely by 2 independent coders and associated with up to 3 different themes. Linear regression was performed to examine the qualities associated with success, which was defined as funds raised when controlling for campaign goals. Logistic regression was used to examine qualities associated with extremely successful campaigns, defined as those raising funds over 1.5 times the IQR.
    RESULTS: Across 82 campaigns, we identified several factors that were associated with fundraiser success. Patients who experienced complications during infectious disease treatment, those who received a pancreas transplant, or those who died from their disease raised significantly more money. Patients older than 61 years raised significantly less money. Extremely successful campaigns (>US $20,177) were associated with campaigners who emphasized a disability from their disease, those who were reluctant to ask for help, or those who died due to their disease.
    CONCLUSIONS: Demographic and thematic factors are associated with transplant patients\' skin cancer-related fundraising success, favoring those who are younger, in more extreme situations, and appear reluctant to ask for help; these findings are consistent with those of previous studies. Additionally, transplant patients have complex and expensive dermatologic needs that may not be fully covered by insurance, as reflected in their GoFundMe campaigns. The most commonly mentioned reasons for fundraising included living expenses or loss of income, inadequate or no insurance, and end-of-life costs. Our findings may inform transplant patients how to maximize the success of their campaigns and highlight gaps in health care coverage for skin cancer-related costs. Limitations include the possibility for misclassification due to the data abstraction process and limiting data collection to fundraisers available on GoFundMe while excluding those on other websites. Further research should investigate the ethical implications of crowdfunding, financial needs of this patient population, and potential ways to improve access to routine skin cancer surveillance among patients receiving transplants.
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  • 文章类型: Journal Article
    背景:医疗费用众筹变得越来越流行。以前很少有研究描述与成功相关的筹款特征和品质。
    目的:本研究旨在表征和调查与成功的皮肤科募捐者相关的素质。
    方法:这项针对皮肤病学GoFundMe活动的横断面研究收集了数据,包括人口统计学变量,使用归纳定性方法的主题变量,和定量信息。线性回归检查了与成功相关的品质,这是根据在控制竞选目标时筹集的资金来定义的。Logistic回归用于检查与非常成功的竞选活动相关的质量,定义为那些提高>IQR1.5倍的人。统计学显著性设定为P<0.05。
    结果:评估了收集数据时的2008年公开活动。与更大的成功相关的不可改变的因素包括男性,年龄20-40岁,白色种族。与成功相关的可修改因素包括发布到营销活动页面的更多更新,竞选创建者的非自我身份,提到慢性病,在竞选个人资料照片中微笑。
    结论:了解医疗众筹的可改变因素可能会为未来的活动提供信息,和不可修改的因素可能会对改善医疗保健公平和融资产生政策影响。医疗疾病治疗的众筹可能会对医疗隐私和现有医疗保健差距的加剧产生潜在影响。这项研究仅限于公开可用的GoFundMe活动。这项研究的潜在限制包括编码器间的可变性,由于数据抽象过程的错误分类偏差,并根据专有的GoFundMe算法对活动进行优先级排序。
    BACKGROUND: Crowdfunding for medical costs is becoming increasingly popular. Few previous studies have described the fundraising characteristics and qualities associated with success.
    OBJECTIVE: This study aimed to characterize and investigate the qualities associated with successful dermatological fundraisers.
    METHODS: This cross-sectional study of dermatological GoFundMe campaigns collected data, including demographic variables, thematic variables using an inductive qualitative method, and quantitative information. Linear regression examined the qualities associated with success, which are defined based on funds raised when controlling for campaign goals. Logistic regression was used to examine qualities associated with extremely successful campaigns, defined as those raising >1.5 times the IQR. Statistical significance was set at P<.05.
    RESULTS: A total of 2008 publicly available campaigns at the time of data collection were evaluated. Nonmodifiable factors associated with greater success included male gender, age 20-40 years, and White race. Modifiable factors associated with success included more updates posted to the campaign page, non-self-identity of the campaign creator, mention of a chronic condition, and smiling in campaign profile photographs.
    CONCLUSIONS: Understanding the modifiable factors of medical crowdfunding may inform future campaigns, and nonmodifiable factors may have policy implications for improving health care equity and financing. Crowdfunding for medical disease treatment may have potential implications for medical privacy and exacerbation of existing health care disparities. This study was limited to publicly available GoFundMe campaigns. Potential limitations for this study include intercoder variability, misclassification bias because of the data abstraction process, and prioritization of campaigns based on the proprietary GoFundMe algorithm.
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