The Winchester, Massachusetts family was desperate to find ways to help a family member fight back against Parkinson’s Disease. Facing hefty medical bills for an experimental treatment, the family turned to the online fundraising platform GoFundMe for help. Donors contributed more than $20,000 so the family member could undergo the treatment that fell outside of the mainstream health care system–and the insurance system that keeps it running.
This family is just one among thousands firing up online fundraising campaigns to offset medical bills. This trend, spreading like prairie fire, brings together patients, their friends and families, stranger donors moved by the narratives, and often medical industry companies that offer products and services that are not yet accepted by mainstream medicine.
And now, these campaigns are attracting the research community.
Why? Because, says Valorie Crooks, professor at Department of Geography, Simon Fraser University, Canada, GoFundMe-type medical fundraisers raise more than dollars. They raise ethical, moral, privacy, and political issues as well.
As recently as 2016, medical GoFundMe campaigns were not on researchers’ radars. That year, Crooks and a colleague at Simon Fraser, Jeremy Snyder, published a paper comprising their initial studies of online crowd-funded medical campaigns. In it, they observed that “virtually no scholarly attention has been paid to these medical crowdfunding campaigns and there is no systematic evidence about how widely they are used and for what reasons, and what effects they have on the provision of medical care and individuals’ relationships to their health systems.”
All that has changed since then. The Simon Fraser researchers have dug deeper into medical campaigns, and this month, a team of U.S. researchers from the Brain Injury Rehabilitation, Shepherd Center, Atlanta, Georgia, and Division of Medical Ethics, New York University School of Medicine, published their findings on GoFundMe medical campaigns in the Journal of the American Medical Association.
The study examined campaigns (98 percent of which used the GoFundMe platform) raising money for five specific treatments, all of them “for scientifically unsupported, ineffective, or potentially dangerous treatments … Homeopathy or naturopathy for cancer, hyperbaric oxygen therapy (HBOT) for brain injury, stem cell therapy for brain injury and spinal cord injury, and long-term antibiotic therapy for “chronic Lyme disease.”
The U.S. researchers and their Simon Fraser peers are exploring two very different sides of the online medical campaign coin.
The results reported in JAMA focused on funds raised for “dubious” medical treatments. Reviewing its own research results and results from another similar study in which a total of nearly $8 million was raised, the U.S. team said: “These results reveal that a wide scope of campaigns for unsupported, ineffective, or potentially dangerous treatments are moderately successful in obtaining funding. Assuming that the funds raised are spent to pay for these treatments, donors indirectly contributed millions of dollars to practitioners to deliver dubious, possibly unsafe care.”
The Canadian team, while still raising issues of ethics, transparency, privacy, and disclosure, wants to know why so many people are turning to crowdfunding to offset medical costs. Crooks said the needs expressed in the campaigns her group studied ranged from foreign medical travel costs to paying for unproven treatment methods to out-of-pocket expenses associated with medical treatment and lost wages following treatment.
“I think those two research priorities are equally important,” she said. “They take different research skillsets to address. I think that ethicists and legal scholars have started to make arguments that address the latter priority [the ethics of supporting unproven treatments], while we’ve still yet to really comprehensively tackle the first priority – which is understanding why people crowdfund and what their campaigns can tell us about unmet need in our health and social care systems.”
One issue of concern to the Simon Fraser team is privacy.
“Crowdfunding is still so new, and so much information is being shared, often, it appears, without the consent of the person the money is being raised for,” she said. “There could be long-term implications of these disclosures, especially in the U.S. system, where that could be a real threat.”
Yet the many financial gaps in the health care and insurance systems of the U.S. and Canada continue to drive more people to crowdfunding for resources, she said.
“That’s why we believe part of the research that needs to be done is about why do people need these campaigns? What is wrong with the system? And any time you have a release of pressure on a public entity, that entity will back away from it. And medical crowdfunding is facilitating relieving the pressure on the pinch point in the system.”
Research on medical crowdfunding is still in its infancy, she emphasized, and barriers to comprehensive research remain. “Because of the caps on the number of campaigns that can be accessed through the search function, it becomes very difficult to gather historical or trend data other than what sites like GoFundMe report themselves,” she said.
Another barrier is how such research will be funded. Simon Fraser’s work has been supported by the Canadian government. But it remains unclear which institutions, organizations or government agencies with deep pockets would be willing to support such work.