Étiquette : Charlie Gard

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The double-edged sword of medical crowdfunding campaigns on social media

Charlie Gard was born in August 2016 with a form of mitochondrial disease, a condition that causes progressive muscle weakness and brain damage. In order to cover the costs of a nucleoside therapy, Charlie’s parents turned to crowdfunding and opened a GoFundMe page. This campaign appeared to be one of the most successful crowdfunding initiatives online, receiving more than £1.2 million in donations in less than 6 months.

The trend of donation-based campaigns, called medical crowdfunding, is growing rapidly in recent years. It can be defined as the raising of funds from a large pool of donors for medical purposes through an online public appeal. While the earliest popular experiments in crowdfunding were in the music industry, crowdfunding websites such as GoFundMe, Kickstarter, and FundRazr are now mainly utilized for raising funds for medical needs. Due to the absence of geographic restrictions and their low transaction costs, those platforms enable patients in urgent need to set up campaigns and receive financial and emotional support from international contributors. It should be noted that the popularity of social media has become as a means for medical crowdfunding. Facebook, Twitter, WeChat, or TikTok enable crowdfunding projects to spread across as wide a range of people as possible in a faster way. Not only are social media convenient for donation, but a simple click of a button is also all takes to share the campaign to another community. Despite the apparent simplicity, medical crowdfunding on social media is not a risk-free practice.  Even though GoFundMe, the most used platform for medical crowdfunding, reported that all campaigns had raised $9 billion in 2019, the reality is that 90% of medical crowdfunding campaigns fail to reach their goal and most of them do not receive any funds. Therefore, medical crowdfunding on social media raises moral issues and reveals insights into questioning access to the healthcare system, particularly for those who struggle to get financial support.

Health-focused campaigns represent GoFundMe’s largest category of fundraising for personal use (Screenshot from www.gofundme.com)

When patients in need turn into content creators

Patients, who start crowdfunding campaigns,  undoubtedly face the tremendous challenges of the attention economy.  Indeed, content creators represent a minority of users, and most of the content posted online is only watched or not watched at all. When these crowdfunding projects are posted on social media where users are connected somehow, the project information can be extensively disseminated among the online community.

Therefore, reaching new people and enhancing the credibility of campaigns ask for digital skills and the implementation of brand content strategies. In this regard, GoFundMe even recommends fundraisers to start a Facebook business page, in order to reach an audience of potential donators and foster communication around their campaign. As crowdfunding on social media relies heavily on electronic word-of-mouth and the ability of fundraisers to make their posts go viral, campaigns’ success tends to reproduce the same strategies that earned media. Launching a business page on social media also lets them track their key metrics (reach, engagement, share rate, like rate) and get to know their audience.

One can easily understand how managing content and following look-alike marketing strategies is beyond the capability of most people. Studies have shown that media literacy and good storytelling play a major role in communicating deservingness, stimulating donations, or spreading the campaign to personal networks. In the context of China, mentioning traditional Chinese cultural values in family and “filial piety”, is likely to generate engagement among viewers. Thus, the way of communicating and being able to adapt to the audience directly impacts users’ trust in projects. When a project is more relatable, users are more likely to feel empathy and donate more money.

The (unfair) advantage of an extensive network

Even though well-tailored strategies offer valuable insights for the success of a crowdfunding campaign, evidence suggests that patients with preexisting large social networks tend to engage more donators, and most donations typically come from donors of the same socioeconomic class as them. As crowdfunding platforms offer an option to share campaigns through various channels, giving access to a broader audience of potential donors. Notably, different strengths of social relationships can affect people’s attitude and behavior. On the one hand, developing strong relationships with help seekers may generate  more empathy towards the projects, and make the audience be more likely to donate as well as to forward the project to other potential donors. On the other hand, studies argue that people with weak social relationships can help to spread the information factors among different groups of users and attract greater social attention from others.

Thus, “celebrity endorsement” could be another effective strategy for medical crowdfunding campaigns on social media. The influence of celebrities’ social capital facilitates peer-to-peer fundraising and the unleashing of “Star Power” to benefit the campaign. For instance, the success of Charlie’s Gard campaign on GoFundMe is partially attributable to significant media attention, not to mention the public support of prominent figures, such as D. Trump and Pope Francis, who drove a high rate of donation to this crowdfunding campaign.

While social media may appear to make raising funds online an easy task, it actually requires know-how, dexterity with technology, and access to a large social network. This ultimately reinforces the gap between people who are more likely to raise funds and those who are not.

Medical crowdfunding and its ethical implications

Accordingly,  the use of social media for crowdfunding presents ethical challenges as human rights can be undermined during those online fundraising campaigns.

Countries with significant socio-economic inequality, typically accentuated by a digital divide, further perpetuate injustices regarding raising funds online. Fundraisers with social privileges like high income, home ownership, and high educational attainment, are more likely to succeed in medical crowdfunding on social media, widening the existent social gap between fundraisers. Additionally, the voluntariness of patients is at stake, especially when they feel indebted, burdensome, or dependent on a caregiver. Indeed, most of them are either too young or too sick to start these campaigns, thus placing them in a vulnerable position. Decisions are made on their behalf by caregivers or family members who decide on the extent of the information to be shared to raise funding. In order to endorse the credibility of a campaign and stimulate donations, crowdfunding platforms encourage the disclosure of sensitive information, as well as the share of pictures and videos, on social media. Families may feel forced by this extensive online sharing strategy, leaving permanent footprints that could impact patients’ lives after recovery. While clinicians are accountable for respecting patients’ wishes and their privacy, it raises the question of whether it is acceptable to harm the family finances for the sole reason of preserving an individual’s autonomy.  Indeed, the rapid spread of information on social media could lead health professionals to face new dilemmas. One wonders whether doctors should be accountable for the accuracy of information posted online by the fundraisers since it can lead to conflicting ethical obligations towards what may be the best for the patient versus the expectations of a pool of donors.

Healthcare system is dead … long live to crowdfunding !

In addition to structural inequities among patients and these ethical issues, sharing medical crowdfunding campaigns on social media reflects serious flaws in the healthcare system, forcing people to turn to donation-based sources of funding.  Indeed, medical crowdfunding first arose in the United States, the United Kingdom, and Canada, where universal health insurance is limited to essential medical services, causing a high uninsurance rate. For instance, in 2009, 62.1% of all bankruptcies in the U.S. were caused by medical debt. Crowdfunding platforms grew rapidly in China as well, due to limited medical resources and disparities between urban and rural public healthcare systems.  Patients resort to crowdfunding for direct health care expenses because of shortfalls in medical insurance coverage, inadequate public health funding, and desperation caused by financial strain from life-threatening medical conditions. In this regard, many people try to convince donators to help them by tweeting their out-of-control medical bills on social media.

« We should not be the solution to a complex set of systemic problems »

Rob Solomon, former GoFundMe CEO

Considering crowdfunding platforms as an “ad-hoc safety net” may detract decision-makers’ attention from structural problems related to healthcare funding. Executives of those platforms are quick to point out that they are not built as a healthcare company: “We should not be the solution to a complex set of systemic problems”, recalled the former GoFundMe CEO in January 2019.  Indeed, they are for-profit. The relationship between them and the campaigners is transactional and may promote commodification of healthcare. In the past, those platforms have even demonstrated bias in donating to some while denying fee waivers to other charitable appeals, thereby enlarging the gap between successful campaigns. To some extent, crowdfunding on social media tends to reflect neoliberal values in which campaign success, virality, and even forms of care become the responsibility of individuals and their personal networks. By reproducing a competitive market environment, social media shift resource allocation according to medical needs toward distribution according to merit. In this sense, there is an urgent need for policymakers to monitor the use of online medical crowdfunding to identify unmet needs and prevent the diversion of attention from policy failures.

Laura Landrein

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