In recent years, online crowdfunding has become a more common method for funding medical treatments, including stem cell-based interventions. Because these methods are often not covered by a patient’s insurance and must be paid for out of pocket, many patients turn to crowdfunding as a way to raise the necessary funds. However, when using a crowdfunding platform, patients have total control over the narrative portrayal of these stem cell interventions.
A research letter published in JAMA outlined how stem cell treatments are described to potential donors. Researchers examined crowdfunding campaigns for stem cell interventions that are advertised using direct-to-consumer (DTC) marketing. The study took into account the amount of funding requested and pledged, the number of donors, and shares on social media, and assessed the campaigns based on their statements about perceived risks and efficacy of the treatments.
The study utilized data from only 2 crowdfunding platforms, suggesting that the overall number of crowdfunding campaigns for stem cell interventions may in fact be higher. Of the 408 campaigns examined in the study, 43.6% made certain or definitive statements about the efficacy of the unproven treatment for which funds are being raised. In addition, all mentions of risks (n=36) claimed that the stem cell interventions had low or no risk compared with alternatives.
Overall, study results study show that crowdfunding campaigns for unproven stem cell-based treatments largely downplay the risks associated with such treatments while exaggerating their efficacy. These misleading and unfounded claims are often paired with the personal narrative of the patient, lending an emotional aspect to potentially false or unproven information. Due to the hyperbolic nature of much of the DTC marketing used for stem cell-based treatments, many of the patients using crowdfunding campaigns echoed this marketing in their own claims.
When interacting with patients who use crowdfunding campaigns to share information about their treatments physicians can combat misinformation by challenging the DTC marketing messages. Doing so would raise awareness about the inaccuracy of the information being shared among patients and the public and help combat the spread of misleading messages.
Snyder J, Turner L, Crooks VA. Crowdfunding for unproven stem cell-based interventions. JAMA. 2018;319(18):1935-1936. doi:10.1001/jama.2018.3057