by Kacper Niburski •
In entrepreneurship, it isn’t what you have; it’s how you sell it. But on crowdsourcing platforms such as Kickstarter or GoFundMe, it is becoming the case that what you have is what you sell: your body.
Avoiding the side-stepping into the lewd and crass, crowdfunding for a cure – or just a medical expense – has become an increasingly viable option. As US healthcare costs climb from their current $9000 per capita, people are asking strangers to help pay their medical bills for treatments such as wisdom teeth removal ($912) to gastrectomy ($30,487). 1-2
This front in electronic generosity, in the birth of a click-away-Good-Samaritan, has led to other health crowdsourced initiatives. CrowdMed is one such platform where people may solicit the advice of volunteer “Medical Detectives” about their condition. 3
Both focus on the fundamentals of complexity, where it is not simply the relations between nodes, or people, that is important but the length of these bands. By bringing multifaceted, disparate individuals on a problem, whether financial or medicinal, more solutions are present.
These are not necessarily better or worse, just more. More ideas. More opinions. More contributions. Whereas a single doctor has one diagnosis with one set pay package against the multitude of possibility, crowdsourcing has a collection of many.
The methods have already proven efficacious in self-reported data of multiple sclerosis (which mirrored in-person assessments) or in monitoring infectious disease outbreaks (where in 2010, discussion groups and Twitter revealed a cholera outbreak two weeks before Haiti’s health ministry issued a report). 4,5
Yet in all its innovative, minted glory, concerns arise.
While it may be the case that technology is value-neutral, itself an argument necessary elsewhere, platforms are themselves run by administrators with their own normative judgments. What is permitted is first decided by these individuals. In September 2014, a GoFundMe fundraiser was shut down for generating money to have an abortion.6 This is despite the woman not having insurance and complications from a “rough, unplanned, and unexpected” pregnancy.
Form expresses content, and crowdsourcing platforms are further constrained to the offerings of a screen: text and video. For crowdsourced advice, the two-dimensional limitations of language are elevated. How can a history of a patient wiggle out in brief paragraphs? How can a relationship of trust and beneficence be built between people who have never met? What is the liability of a physician who gives guidance? Of a volunteer consultant? With no prior association or one that can be built upon, the intricacies of physical contact is lost. This says nothing of the narrative of disease that is contained in a silence or a shoulder shrug and can only be elicited from in-contact screenings.
It is no wonder, then, that crowdsourcing is only a compound word away from crowd mentality. If the story is not individualized enough, if it is not devastating, eye-popping sad, if it does not show vulnerability, if is not rare, if it does not make one happy that this terrifying malady isn’t happening to them, then it will not gain traction. Money will not aggregate. And the individual will still be left sick, although not eye-popping sick.
At its most fundamental, crowdsourced healthcare is compare-and-contrast shopping, a scarcity of resource lent out not by need, but by appeal. By flaunting illness. By showing pictures of vomit to separate oneself from regular up-chuckers and to reveal how much blood has been lost.
Questions of how accessible this information is also becomes an issue. What if the campaign is successful? Is it lauded and presented as a case-study in emotional exhibitionism? What if it is not?
In either case, privacy is lost. And while this is the fullest extent of autonomy where an individual can choose to withhold as much or as little as they want, it is not autonomy maintained for good. That is, crowdsourcing doesn’t ensure good; it is only a way to it. A doctor wants the best for the patient whereas a donor wishes the best bang for their buck.
While to say as much seems a cynical construction of otherwise good intentions, this is not the case. Crowdsourcing is a product of the environment it maintains. It is born out of absence and deprivation.
The ultimate issue with crowdsourcing thus becomes its self-perpetuating necessity. Despite appearing newfangled, it is hardly a novel idea. Bake sales and town councils once took their place. In this way, the system has not changed and the solutions carved of need only repurposed. Inequality still exists. Care is still dismal for some.
The sharing economy that crowdsourced funds and advice represents are attempts to address healthcare’s composite illness. But they are only a band-aid – multiple, different coloured bandages across a wound that is becoming wider, uglier, and more permanent.
- The World Bank.Health expenditure per capita. <http://data.worldbank.org/indicator/SH.XPD.PCAP>
- Park, A. Crowdfunding for a cure.Time Magazine. 2013. <http://content.time.com/time/magazine/article/0,9171,2129795,00.html>
- CrowdMed. <https://www.crowdmed.com/our-mission>
- Bove, R. et al. Evaluation of an online platform for multiple sclerosis research: Patient description, validation of severity scale, and exploration of BMI effects on disease course.PLOS one. 2013.
- Chunara, R. et al. Social and news media enable estimation of epidemiological patterns early in the 201 Haitian cholera outbreak.American Journal of Tropical Medicine and Hygeine. 2012. 86, 39-45.
- Berman, J. Crowdfunding site GoFundMe won’t let crowds fund abortions.Huffington Post. 2014. <http://www.huffingtonpost.com/2014/09/11/gofundme-abortions_n_5804228.html>