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

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

[Medical philanthropy in the United States]. / La philanthropie médicale aux États-Unis.

Philanthropic foundations played a crucial role in rationalizating and organizing American society in the late 19th and early 20th centuries. The promotion of science was applied to medical reform, leading to the advent of genuine medical research within the framework of brand-new university hospital faculties. With the two world wars, the state became heavily involved in the field of healthcare. After 1945, it became the main source of funding for biomedical research. Philanthropy did not disappear from the institutional landscape; it continued to work in tandem with public authorities. Its role in medical research is now minor in terms of funding volume, but a strategic one in the development of projects aimed at advancing basic science and knowledge of various diseases.

Title: La philanthropie médicale aux États-Unis. Abstract: Les fondations philanthropiques ont pris une part décisive dans la rationalisation et l'organisation de la médecine dans la société américaine des débuts du xxe siècle, période pendant laquelle la promotion de la science a donné lieu à l'avènement d'une véritable recherche médicale spécialisée dans le cadre des nouvelles facultés hospitalo-universitaires. Avec les deux guerres mondiales, l'État fédéral s'est fortement engagé dans le champ de la santé. Au point qu'après 1945, il est devenu la principale source de financement de l'innovation biomédicale. La philanthropie ne disparaît pas pour autant du paysage institutionnel. Elle continue de fonctionner en tandem avec les pouvoirs publics. Son rôle est aujourd'hui minoritaire en termes de volume de financement, mais stratégique dans l'avènement de projets visant à faire avancer les connaissances sur des processus fondamentaux ainsi que sur de nombreuses maladies.

Characterizing online crowdfunding campaigns for patients with kidney cancer.

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.

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

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

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

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

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

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

Virtual reality as a tool for environmental conservation and fundraising.

Anecdotal evidence from philanthropic fundraisers shows that virtual reality (VR) technology increases empathy and can influence people toward pro-environmental behavior. Non-profit organizations are increasingly marketing their causes using virtual reality and they report increased donations when VR technology is employed. In VR, users are immersed in situations intended to feel more like the real world through technology, such as 360° video viewed through 3D headsets that block out visual and auditory distractions. The framing of the message as either positive or negative has long shown to have an effect on behavior, although consensus on the impact of framing has not been reached in relation to encouraging contributions to public goods. This paper focuses on field experiments used to investigate the effects of varying degrees of visual immersion and positive versus negative message framing on respondents' contributions to a conservation charity. Participants were exposed to a five-minute underwater film about coral reefs and the importance of protecting them. We employed a 2x2 experimental design using 3D head-mounted displays comparing 360° film footage vs. unidirectional film and a positive message vs. a negative message. After watching the film, each participant completed a short questionnaire and had the opportunity to donate to a marine conservation charity. In addition, we tested a control treatment where no video was observed. The video was filmed in Indonesia which is host to some of the world's most biodiverse reefs that are under great threat from human activity. We also conducted the study in Indonesia, sampling a total of 1006 participants from the Bogor city area and tourists on the island of Gili Trawangan-which is popular for scuba diving and snorkeling. We find significant differences in observed behavior and reported emotions between all treatments compared to the control condition. Among the tourist sample, we find significant differences between the 360° film with a negative message which garnered significantly larger average donation amounts compared to the unidirectional film with both positive and negative framing. Overall, we can infer from these studies that virtual reality is an effective way to raise awareness of environmental threats and encourage behavioral action, especially when tailored to target groups. New technology, such as the VR head-mounted display, is highly effective at attracting interest which is an important point to encourage organizations to invest in new technologies.

Ethical, legal, and social issues (ELSI) in rare diseases: a landscape analysis from funders.

Recent interest in personalized medicine has highlighted the importance of research in ethical, legal, and social issues (ELSI). Issues in ELSI research may be magnified in the rare diseases population (i.e., small numbers of affected individuals, challenges in maintaining confidentiality, and paucity of treatments for diseases where natural history information may be limited). More than other areas of research, potential barriers include the lack of funding opportunities and appropriate review processes for applications to funding agencies. The ELSI Working Group of the International Rare Diseases Research Consortium (IRDiRC) performed an informal survey on ELSI funding initiatives to learn more about different funding mechanisms and to identify potential gaps in funding opportunities. The Working Group discusses these challenges and highlights the role of funding agencies and partners such as patient advocacy groups, specialists in social sciences and humanities, and clinicians to advance ELSI research in rare diseases.

A Philanthropic Approach to Supporting Emergent Disaster Response and Recovery.

In August 2017, Hurricane Harvey struck the US Gulf Coast and caused more than US $125 billion in damages in Texas. The loss of lives and the economic damages resulted in an outpouring of support for the recovery efforts in the form of federal assistance and private donations. The latter has supported more creative approaches to recovery. Organizations that normally would not receive funding were able to obtain resources to use in novel manners. Using the framework of Dynes typology to identify groups and their respective structures and tasks, this report from the field analyzes Hurricane Harvey and the financial support mechanisms used to support recovery efforts in Texas, what organizations were funded to do, and where they fit into Dynes typology. The authors close by noting the importance of these emerging organizations and the need to support diversity in funding disaster response and recovery efforts beyond large nonprofit organizations.

Global public and philanthropic investment in childhood cancer research: systematic analysis of research funding, 2008-16.

Childhood cancers caused an estimated 75 000 deaths in children aged 0-14 years in 2018, of which 90% were in low-income and middle-income countries, and yet this group is missing from global health agendas. We examined global patterns in public and philanthropic funding for childhood cancer research-a proxy for global research activity-to address the critical gaps in knowledge. We used data from the Dimensions database to systematically search for and analyse 3414 grants from 115 funders across 35 countries between 2008 and 2016, organised by funding source, recipient, tumour type, research focus, and pipeline categories, to investigate trends over time. During this period, global funding for childhood cancer research was US$2 billion, of which $772 million (37·9%) was for general childhood cancer, $449 million (22·0%) was for leukaemias, and $330 million (16·2%) was for CNS tumours. $1·6 billion (77·7%) of funding was awarded from, and to, institutions based in the USA. Preclinical research received $1·2 billion (59·3%), and around $525 million (25·7%) included support for clinical trials, but only $113 million (5·5%) supported health-care delivery research. Overall, funding was inadequate and geographically inequitable, and new commitments to funding have declined since 2011.

Fundraising and vote distribution: A non-equilibrium statistical approach.

The number of votes correlates strongly with the money spent in a campaign, but the relation between the two is not straightforward. Among other factors, the output of a ballot depends on the number of candidates, voters, and available resources. Here, we develop a conceptual framework based on Shannon entropy maximization and Superstatistics to establish a relation between the distributions of money spent by candidates and their votes. By establishing such a relation, we provide a tool to predict the outcome of a ballot and to alert for possible misconduct either in the report of fundraising and spending of campaigns or on vote counting. As an example, we consider real data from two proportional elections with more than 6000 candidates each, where a detailed data verification is virtually impossible, and show that the number of potential misconducting candidates to audit can be reduced to less than ten.

Downstream Effect of a Proton Treatment Center on an Academic Medical Center.

PURPOSE: To quantify the effects of opening a proton center (PC) on an academic medical center (AMC)/radiation oncology department. METHODS AND MATERIALS: Radiation treatment volume and relative value units from fiscal year 2015 (FY15) to FY17 were retrospectively analyzed at the AMC and 2 community-based centers. To quantify new patient referrals to the AMC, we reviewed the electronic medical record for all patients seen at the PC since consults were initiated in November 2015 (n = 1173). Patients were excluded if the date of entry into the AMC electronic medical record predated their PC consultation. Hospital resource use and professional and technical charges were obtained for these patients. Academic growth, philanthropy, and resident education were evaluated based on grant submissions, clinical trial enrollment, philanthropy, and pediatric case exposure, respectively, from PC opening through FY17. RESULTS: From FY15 to FY17, radiation fractions at the AMC and the 2 community sites decreased by 14% (95% confidence interval [CI], 12%-16%, P < .001) and increased by 19% (95% CI, 16%-23%, P < .001) and 2% (95% CI, -1.1 to 4.3%, P = NS), respectively; the number of new starts decreased by 3% (95% CI, -13% to 7%, P = NS) and 2% (95% CI, -20% to 16%, P = NS) and increased by 13% (95% CI -2% to 27%, P = NS), respectively. At the AMC, technical and professional relative value units decreased by 5% and 14%, respectively. The PC made 561 external referrals to the AMC, which resulted in $2.38 million technical and $2.13 million professional charges at the AMC. Fifteen grant submissions ($12.83 million) resulted in 6 awards ($3.26 million). Twenty-two clinical trials involving proton therapy were opened, on which a total of 5% (n = 54) of patients enrolled during calendar years 2017 and 2018. The PC was involved in gift donations of $1.6 million. There was a nonsignificant 37% increase in number of pediatric cases. CONCLUSIONS: Despite a slight decline in AMC photon patient volumes and relative value units, a positive downstream effect was associated with the addition of a PC, which benefited the AMC.

Crowdfunding scientific research: Descriptive insights and correlates of funding success.

Crowdfunding has gained traction as a mechanism to raise resources for entrepreneurial and artistic projects, yet there is little systematic evidence on the potential of crowdfunding for scientific research. We first briefly review prior research on crowdfunding and give an overview of dedicated platforms for crowdfunding research. We then analyze data from over 700 campaigns on the largest dedicated platform, Experiment.com. Our descriptive analysis provides insights regarding the creators seeking funding, the projects they are seeking funding for, and the campaigns themselves. We then examine how these characteristics relate to fundraising success. The findings highlight important differences between crowdfunding and traditional funding mechanisms for research, including high use by students and other junior investigators but also relatively small project size. Students and junior investigators are more likely to succeed than senior scientists, and women have higher success rates than men. Conventional signals of quality-including scientists' prior publications-have little relationship with funding success, suggesting that the crowd may apply different decision criteria than traditional funding agencies. Our results highlight significant opportunities for crowdfunding in the context of science while also pointing towards unique challenges. We relate our findings to research on the economics of science and on crowdfunding, and we discuss connections with other emerging mechanisms to involve the public in scientific research.

Funding Academic and Clinical Nurse Strategies Through Joint Fund-raising Initiatives and Grateful Patient Engagement.

The Manatt report recommends a multipronged revenue portfolio to support academic health center (AHC) nursing: tuition, clinical practice, and external support. Most AHC nursing enterprises rely only on the first two-student tuition and patient billing. Philanthropy is not generally viewed as a viable revenue stream, especially for clinical nursing operations, but it should be. While health care's operating margins are shrinking, philanthropy continues to rise. In 2016, joint hospital and medical school fund-raising programs received an average of $100 million per organization. Nursing schools and hospitals concentrate on alumni and staff giving. As a result, the largest contributors to health centers, grateful patients, are missed. This is unfortunate, because gifts from grateful patients would add to the revenue pool and because the ability to express gratitude in a meaningful way seems to aid in a patient's recovery process. Evidence suggests that patients who actively express gratitude have a stronger immune system, lower blood pressure, improved ability to heal, less loneliness, and more joy, optimism, and happiness. By working together, schools of nursing and the clinical nursing enterprises in AHCs can create projects and initiatives that are very attractive to patients and families who value the tripartite mission of caring, teaching, and discovery. These patients and families wish to honor the nurses who have sustained them through their illness. Their philanthropy serves to honor nurses, fund relevant programs, benefit future patients, and aid in the donors' recovery.

Fertility preservation options in pediatric and adolescent patients with cancer.

The incidence of childhood cancer has steadily increased since the 1950s, with approximately 16,000 children diagnosed each year. However, with the advent of more effective multimodal therapies, childhood cancer survival rates have continued to improve over the past 40 years, with >80% of patients now surviving into adulthood. Fertility preservation (FP) has become an important quality-of-life issue for many survivors of childhood cancer. As a result, the therapeutic options have become less gonadotoxic over time and more patients are being offered FP options. This review examines the indications for consultation, male and female FP options both in the prepubertal patient and adolescent patient, and the unique ethical issues surrounding FP in this vulnerable population. Cancer 2018;124:1867-76. © 2018 American Cancer Society.