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.

Pilares para la excelencia en las unidades de nutrición: la investigación / Pillars for excellence in nutrition units - Research

Investigar en nutrición clínica y dietética consiste en "realizar actividades intelectuales y experimentales de modo sistemático con el propósito de aumentar los conocimientos de esta materia". La investigación biomédica que se realiza en las unidades de nutrición clínica y dietética (UNCyD) debe ser clínico-traslacional, entendida como la forma más rápida de conseguir que los nuevos conocimientos científicos se transfieran no solamente a la investigación clínica sino también a la práctica asistencial. Cuando las UNCyD realizan investigación, independientemente del tipo y la extensión, alcanzan mayores cotas de calidad en la atención sanitaria que prestan a sus usuarios. La práctica clínica y la investigación científica son actividades que constituyen una acción continuada e indisoluble. Por ello, tanto los responsables de las gerencias sanitarias como los de las unidades de nutrición y todos sus miembros tienen la obligación de fomentar la investigación. En el artículo se realiza un breve repaso histórico del nacimiento de la nutrición clínica como disciplina científica, se nombra someramente la legislación que sustenta la investigación biomédica, se proponen las principales claves para potenciar la investigación en las UNCyD y, por último, se orienta sobre las principales vías de financiación y sobre cómo realizar la transferencia y difusión de los resultados

Research in clinical nutrition and dietetics consists of "carrying out intellectual and experimental activities in a systematic way with the purpose of increasing knowledge on this topic." The biomedical research carried out in clinical nutrition and dietetics units (UNCyDs) must be clinical-translational, which is understood as the fastest way to ensure that new scientific knowledge is transferred not only to clinical research but also to clinical practice. When UNCyDs conduct research, regardless of type and extent, they achieve higher quality standards in the health care they provide to their users. Clinical practice and scientific research are activities that constitute a continuous, indissoluble action. For this reason, both those responsible for health management and nutrition units and all their members have an obligation to promote research. In this article, a brief historical review of the birth of clinical nutrition as a scientific discipline is made, the legislation that supports biomedical research is briefly mentioned, the main keys to promote research in UNCyD are proposed, and finally orientation is offered on the main funding for biomedical research programs, and how to transfer and disseminate results

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.

Media briefing on COVID-19 - 29/06/2020

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Live from WHO Headquarters: COVID-19 daily press briefing 22 April 2020

Originally broadcast live on 22 April 2020, the daily press briefing on coronavirus COVID-19, direct from WHO Headquarters, Geneva Switzerland with Dr Tedros WHO Director-General, Dr Micheal Ryan, Executive Director of the Health Emergencies Programme, and Dr Maria Van Kerkhove, Technical lead, Health Emergencies Programme.