Crowdfunding for unmet medical needs

Renwick and Mossialos [51] provide a useful typology for crowdfunded health projects. They classify health-related crowdfunding campaigns into four types according to the project’s purpose and the funding method. In their typology, crowdfunding projects might finance health expenses, health initiatives, research, or commercial health innovation. Crowdfunding projects in the first category aim at financing a patient’s out-of-pocket expenses for medical services and products, while health initiatives in the second category provide benefit to the wider public or a specific group of people and raise funds, for example, for patient education programmes and disease awareness.

While unmet medical needs are evident when individuals aim at covering their health expenses from donations, all other types of crowdfunding campaigns are related to unmet medical or health-related needs of specific patient populations. Education and awareness-related health initiatives are indications of unmet need for knowledge among patients with a specific disease or disorder, while crowdfunded health projects typically focus on unmet medical needs of patients where treatment is not yet available. Finally, commercial health innovations aim at meeting the drug and therapy (innovative, complementary or alternative) needs of individuals with disposable income.

The market for crowdfunded health projects is large and growing exponentially. Given the decentralized nature of the crowdfunding market, estimating the size of the market is challenging. Bassani et al. [1] estimate that by October 2017 health care campaigns raised over $132 million. In contrast, medical crowdfunding campaigns launched on GoFundMe suggest a much larger market size. By 2018, GoFundMe hosted more than 250,000 medical campaigns per year worldwide; these campaigns raised more than $650 million in total [52, 53].

A few studies assess the unmet medical needs of specific patient groups as revealed in crowdfunding campaigns. Studies cover, for example, the unmet needs of patients suffering from cancer [54, 55], patients undergoing orthopaedic surgery [56] or abortion [57, 58], individuals undergoing organ transplants [59, 60] or desiring gender change [61].

Two very recent studies map the health-related needs of a diverse population using crowdfunding; these studies are the closest to the present study. These recent exploratory studies download selected campaigns from GoFundMe for UK and for British Columbia, Canada, respectively [62, 63].

For the UK, the authors analyse 400 campaigns drawn from a non-representative sample (campaigns with larger fundraising target and raising more funds are overrepresented) and point to the barriers in treatment access: limited access to novel therapies in cancer treatment and long waiting times [62].

For Canada, the authors investigate 423 campaigns from British Columbia and show that individuals frequently sought financial support due to gaps in the wider social system: lost wages because of illness and travel-related costs to access care [63]. The authors argue that the commonly perceived limitations of the Canadian health system, such as long waiting times for care and limited access to specialist services did not frequently motivate individuals to seek help from the crowd [63].

Crowdfunded health projects reflect only a small fraction of unmet medical and medical-related needs. In general, younger adults with higher digital literacy launch crowdfunding campaigns. Berliner and Kenworthy [3] report that crowdfunding campaigns are typically launched by individuals who have better reading and writing skills, and who have mastered good medical, social media and technical literacy. Snyder et al. [64] also argue that crowdfunding is used by relatively privileged members of society, those being digitally literate and having large social networks. Indeed, large social networks play an important role in reaching the fundraising target; sharing campaigns online through social media sites such as Twitter or Facebook increases the probability of success [56, 65,66,67]. At the same time, membership of marginalized race and gender groups decreases the probability of reaching the fundraising target; the average donation amount is lower among these marginalized groups [68].

Perhaps the most important critique of crowdfunding is that the less privileged are squeezed out of the crowdfunding market; they not only launch proportionately fewer campaigns, but they also receive less by way of donations per campaign [54, 61, 64, 68]. Fundraising campaigns for medical care reveal and reinforce health and social inequalities [54, 61, 64, 68]. The unmet medical needs of the most needy remain unmet even after launching crowdfunding campaigns. In this way crowdfunding creates an unequal and biased marketplace, thus fuelling health inequities and widens the gap in society [54, 64, 68].