MEZIESBLOG

In one-fourth of the crowdfunding campaigns (n = 96, 25.26%) individuals blamed the sickness fund and referred to gaps in service provision. Those gaps were almost exclusively related to the range of services provided by the sickness funds. Prominent examples of such gaps include additional, alternative and complementary therapies, rehabilitation after injury or cancer, and equipment to facilitate mobility. Accessing alternative, complementary, and novel therapies is highly important for patients with poor life prognosis and those with strong disabilities. In a low number of cases individuals expressed their desire to get access to specific treatment methods which was rejected by the sickness fund. Prominent examples of such rejection include dental and orthodontal care, liposuction intervention and in-vitro fertilization with low expected success rate.

Not all medical needs described in the campaign texts should be considered as a health system gap. Scientifically unsupported and dangerous treatments, and medical interventions increasing the well-being of individuals but not being considered as traditional, alternative and complementary therapies (e.g., cosmetic surgeries, gender change) fall well outside the scope of the statutory health insurance scheme.

A small number of residents sought funds for treatment abroad (n = 27, 7.11%). These campaigns were all related to accessing care not available in Germany. Special rehabilitation therapies not available in Germany (n = 12, 3.16%) and dolphin-therapies most probably only improving the mood of the child and the family being on vacation (n = 10, 2.63%) are prominent examples for such care [108]. Surgeries outside Germany were requested only in three cases (0.79%). No individuals believed that they would have access to better care elsewhere; nobody desired to be treated abroad when the treatment was available in Germany.

In the textual description of the campaigns, individuals complained about long waiting times only in a few cases (n = 5, 1.32%). In spite of the complaints and the desire to shorten the waiting times, individuals did not consider the possibility of bypassing the waiting list, for example, by undergoing the medical procedure in a private clinic. Only one fundraiser expressed fears that her health condition would deteriorate further by the time the statutory health insurance takes care of her. Deteriorating health condition was rather mentioned as an argument to raise funds for an alternative treatment which might help improving the health status.

Fraud and ethical considerations

Out of the 380 campaigns, two were evidently fraudulent campaigns. One researcher, claimed to be the discoverer of mitochondrial intelligence, asked for €6 million in donations to save the lives of millions [83]. This target sum is by far the highest on Leetchi in the category of health; it is twice as high as the target sum of all other medical crowdfunding campaigns in aggregate. In his project description Dorian Treitz claims to be the discoverer of mitochondrial intelligence, a discovery not yet published, which has dramatic consequences for all of us [83]. Nevertheless, the campaign holder had no publications on Google Scholar.

In another campaign, donations were asked for special therapy weeks for blind children for letting them experience seeing without eyes [112]. The organizer, Axel Kimmel, claims that with their innovative technique blind people can visually recognize the world again. According to current knowledge in medicine, although it is possible to sense light without sight as humans may have light-detecting molecules outside of the eyes [113], humans cannot see without eyes; they cannot detect the wavelengths of the electromagnetic spectrum and turn it into visual images. It is also worth noting that this crowdfunding campaign has been described as a magic trick by former trainer Reinhard Hofstetter pointing out that it is all about motivation, beliefs and positive attitudes towards life [114].

In general, the functioning of crowdfunding platforms is conditional upon trust in their legitimacy; this trust is a precondition for donors to participate. As a result, to enhance platform legitimacy, crowdfunding platforms should take a larger role in detecting and punishing fraudulent behaviour. Those campaigns where fraud is evident should not be published on crowdfunding platforms. For published campaigns, easy-to-use tools should be available for individuals to report suspected fraud; such campaigns should then be investigated and removed if indeed deemed fraudulent.

In addition to misusing funds, crowdfunding raises several important ethical concerns. Among others, medical crowdfunding may undermine privacy; to establish credibility, individuals launching a medical crowdfunding campaign must disclose personal health information [65, 115, 116]. Although campaign holders are typically aware of losing their privacy, they are not overwhelmingly concerned; the financial need outweighed the discomfort of publishing personal health information online [116]. In health systems with universal coverage, crowdfunding might introduce market norms that could commodify health care [117]. In countries without universal health coverage, medical crowdfunding might widen health inequities as it benefits relatively wealthy members of society, those being digitally literate and having large social networks [64]. 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.

Limitations

This exploratory study suffers from several limitations when mapping unmet health care need. Most importantly, many affected individuals may not consider crowdfunding as a viable option for financing their medical expenses and do not launch any crowdfunding campaigns. Thus, unmet health care needs are only mapped for a subpopulation of patients; namely, for those who have mastered better medical, social media and technical literacies and have better reading and writing skills [3, 64]. As a result, children and young adults are overrepresented, while the middle-aged and elderly are underrepresented in the sample when compared to the age distribution of the population in Germany [69], given the higher digital literacy of young adults (as parents of children). Medical conditions and expenses identified in this study should thus be considered as a non-representative snapshot of unmet health care needs.

As a second limitation, the funding need estimates of this study are only indicative of unmet health care and health-related needs. Although unmet needs are evidently present, estimating related funding needs presents a challenge. Affected individuals may not consider crowdfunding as a viable option for financing their medical expenses, and half of those launching a crowdfunding campaign do not state any target sum, merely that donors should give as much as they want.

Third, we mapped unmet health care needs based on crowdfunding campaigns from one platform from one country. Had we extracted information from other crowdfunding platforms and from other countries, we might have identified partly different medical conditions and expenses due to variations in platform settings and expenses universally covered. Nevertheless, the typology proposed in this study should be valid to some extent for all countries with universal health coverage. Finally, we could only filter out evident misuse of funds raised via crowdfunding. We could not control for other forms of fraud such as lying about medical conditions, creating fake campaigns for sick acquaintances, and using donations for purposes other than those indicated in the campaign description [65].

Conclusions
In this exploratory study we mapped the unmet medical and health-related needs of residents in Germany, in a healthcare system with universal health coverage., We identified the most common conditions, diseases and disorders which prompted individuals to turn to crowdfunding. The nine most common conditions covered almost two-thirds of campaigns. We found that some of these conditions overlap with the most disabling conditions when measured by disability-adjusted life years. Cancer, mental, musculoskeletal and neurological disorders were frequently listed conditions in crowdfunding campaigns while being leading causes of disability worldwide. 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 were not listed among the leading causes of disability worldwide, these conditions frequently prompted individuals to turn to crowdfunding.

In Germany, where statutory health insurance provides wide coverage, medical crowdfunding might be considered as a viable option for financing experimental and poorly supported therapies lacking an evidence base, alternative and complementary therapies giving comfort and increasing the well-being of patients and their families, therapies with a low expected success rate (e.g., in-vitro fertilization for women with severe endometriosis) or much higher costs (e.g., orthodontic treatment beyond age 18), and interventions which increase the well-being of individuals but cannot be considered as traditional, alternative and complementary therapies (e.g., cosmetic surgery, gender change, dolphin therapy). Scientifically unsupported and dangerous treatments, such as homeopathy for cancer, should be neither supported by the statutory health insurance fund nor allowed to be launched on crowdfunding websites.

The medical condition that individuals were suffering from resulted in significant unmet non-medical needs as well. This exploratory study revealed that in more than one-fifth of crowdfunding campaigns, individuals sought financial support to cover their daily expenses. Due to their or a family member’s poor health status individuals could not earn sufficient income and thus turned to crowdfunding to address the financial burden caused by poor health beyond medical needs. This finding is in line with the social drift hypothesis − disabled and bad health status is associated with poor socioeconomic status. These campaigns thus were motivated by gaps in the wider social system. Asking donations for daily expenses show that unmet non-medical needs should also be part of the discussion on the burden of ill health and gaps in the social security system.

This study provided a first glimpse into using the textual descriptions of medical crowdfunding campaigns as a supplementary source of information for the statutory health insurance scheme. It offered an innovative insight into the unmet medical and social needs of a non-representative patient population. Although it is too early to formulate relevant policy recommendations based on this exploratory study, further analysis of the most common diseases and disorders listed in crowdfunding campaigns might provide guidance to national health insurance funds in extending their list of funded medical interventions in countries with universal health coverage. Individuals in desperate need launching crowdfunding campaigns with those diseases signal high unmet needs for available but as yet unfinanced 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 the statutory health insurance in Germany.

Given the exploratory nature of this study, there is a clear need for additional research. Future studies should address the implications of medical crowdfunding for the health status of individuals; the possibility to access a larger pool of alternative, complementary and experimental therapies; the non-desired consequence of assessing scientifically unproven and dangerous treatments; the implications for equity; and the potential gaps in the health care and social security system. In addition, fraud in medical crowdfunding should be kept to a minimum, there is a need for policy recommendations to avoid such fraud.