Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

Snyder, Jeremy; Cohen, I. Glenn

doi:10.1002/hast.1066

Cited by 14 publications

(19 citation statements)

References 9 publications

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“…Lastly, it is also important to increase the public's understanding of the possible adverse health effects of misinformation (Snyder & Cohen, 2019). Health misinformation should be incorporated into digital education curriculum to educate the public on how to find, assess, validate, and corroborate information from trusted sources before adopting recommendations seen on social media platforms.…”

Section: Challenge and Conclusionmentioning

confidence: 99%

Identifying patterns to prevent the spread of misinformation during epidemics.

Nsoesie¹,

Oladeji²

2020

HKS Misinfo Review

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Identifying patterns to prevent the spread of misinformation during epidemicsThis paper discusses patterns of public health misinformation observed during infectious disease epidemics. Specifically, we group epidemic-related misinformation into four categories: transmission, prevention, treatment, and vaccination. By developing tools, algorithms, and other resources around these categories, institutions, companies, and individuals can proactively limit and counter the spread of misinformation and its potential negative health effects.

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Section: Challenge and Conclusionmentioning

confidence: 99%

Identifying patterns to prevent the spread of misinformation during epidemics.

Nsoesie¹,

Oladeji²

2020

HKS Misinfo Review

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“…Stem cell tourism is an essential element of the growing industry of medical travel and global health and involves those interventions that are not clinically approved (Ormond & Sulianti, 2017). A new method of stem cell treatment will be encouraged by evidence through proper experiments in clinics and gain approval from regulatory authorities, before it is accessible to the general public and eligible for obtaining funds through different medical schemes or health insurance (Timmermans & Berg, 2003;Snyder & Cohen, 2019). In biomedical science, for the approval of a new treatment method, a 'gold standard' of the evidence in the form of the better and systematic review and randomized double-blind control trial is needed which summarize the evidence from all clinical trials of a specific minimum quality standard (Cochrane, 2015;Snyder & Cohen, 2019).…”

Section: Role Of Stem Cell Tourism In the Medical Travel Industrymentioning

confidence: 99%

Stem Cell Tourism and International Trade of Unapproved Stem Cell Interventions

Ali¹,

Rahman²,

Anser³

2020

ASSAP

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Nowadays, stem cell treatments for different medical situations are generally advertisedthrough websites of different global hospitals and clinics. However, most stem cell treatmentsare clinically unapproved. This paper describes different features of the international trade ofstem cell tourism, including the locality, risks and environmental regulations. Stem celltourism is considered to be a subset of a far broader industry of stem cell interventions, whichmay be suitable in extraordinary conditions where the number of patients is small. However,the extensive trade and application of stem cell treatment in different countries does not givethe affirmation of health gains to qualify as treatment and producing regulatory problems forthe development of effective stem cell treatments and patient care. The governments shouldprovide sufficient funding by supervising the public research programs and formulate newgovernance structures for coercive transnational activities related to international trade ofunapproved stem cell interventions.

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“…These people rely on medical crowdfunding which will undermine systemic health reforms by delaying or impeding those reforms through alleviating a need that is or should fall on the system to meet [ 54 , 61 , 64 , 68 ]. Another ethical concern is using medical crowdfunding for scientifically unsupported or potentially dangerous treatments [ 109 , 118 ]. Vox et al [ 109 ] report that over 1000 medical crowdfunding campaigns raised money for five different treatments that are unsupported by evidence or are potentially unsafe—more than $6.7 million in total.…”

Section: Discussionmentioning

confidence: 99%

Medical crowdfunding in a healthcare system with universal coverage: an exploratory study

Lublóy

2020

BMC Public Health

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Background In recent years, crowdfunding for medical expenses has gained popularity, especially in countries without universal health coverage. Nevertheless, universal coverage does not imply covering all medical costs for everyone. In countries with universal coverage unmet health care needs typically emerge due to financial reasons: the inability to pay the patient co-payments, and additional and experimental therapies not financed by the health insurance fund. This study aims at mapping unmet health care needs manifested in medical crowdfunding campaigns in a country with universal health coverage. Methods In this exploratory study we assess unmet health care needs in Germany by investigating 380 medical crowdfunding campaigns launched on Leetchi.com. We combine manual data extraction with text mining tools to identify the most common conditions, diseases and disorders which prompted individuals to launch medical crowdfunding campaigns in Germany. We also assess the type and size of health-related expenses that individuals aim to finance from donations. Results We find that several conditions frequently listed in crowdfunding campaigns overlap with the most disabling conditions: cancer, mental disorders, musculoskeletal disorders, and neurological disorders. Nevertheless, there is no strong association between the disease burden and the condition which prompted individuals to ask for donations. Although oral health, lipoedema, and genetic disorders and rare diseases are not listed among leading causes of disability worldwide, these conditions frequently prompted individuals to turn to crowdfunding. Unmet needs are the highest for various therapies not financed by the health insurance fund; additional, complementary, and animal-assisted therapies are high on the wish list. Numerous people sought funds to cover the cost of scientifically poorly supported or unsupported therapies. In line with the social drift hypothesis, disability and bad health status being associated with poor socioeconomic status, affected individuals frequently collected donations for their living expenses. Conclusions In universal healthcare systems, medical crowdfunding is a viable option to finance alternative, complementary, experimental and scientifically poorly supported therapies not financed by the health insurance fund. Further analysis of the most common diseases and disorders listed in crowdfunding campaigns might provide guidance for national health insurance funds in extending their list of funded medical interventions. The fact of numerous individuals launching crowdfunding campaigns with the same diseases and disorders signals high unmet needs for available but not yet financed treatment. One prominent example of such treatment is liposuction for patients suffering from lipoedema; these treatments were frequently listed in crowdfunding campaigns and might soon be available for patients at the expense of statutory health insurance in Germany.

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Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

Cited by 14 publications

References 9 publications

Identifying patterns to prevent the spread of misinformation during epidemics.

Identifying patterns to prevent the spread of misinformation during epidemics.

Stem Cell Tourism and International Trade of Unapproved Stem Cell Interventions

Medical crowdfunding in a healthcare system with universal coverage: an exploratory study

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