Cancer crowdfunding stories often highlight financial hardship
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More than a quarter of cancer-related crowdfunding stories explicitly related experiences of medical financial hardships, according to cross-sectional study results.
A high percentage of posts also cited health-related social needs, including food insecurity, income loss, unstable housing and lack of sick leave.
Researchers with American Cancer Society extracted all cancer-related fundraising stories from GoFundMe’s website between Jan. 1, 2021, and May 31, 2023.
Investigators used OpenAI’s large natural language processing (NLP) model to obtain information on patient socioeconomic status, cancer diagnosis and treatment, and reasons for seeking financial assistance.
Researchers identified 91,113 cancer-associated crowdfunding campaigns. Among those with NLP outputs, more than half of which were on behalf of women (57.1%) and individuals aged 18 to 64 years (62.9%).
Investigators analyzed more than 24 million words from the fundraising stories to examine indications of medical financial hardship or health-related social needs, including disruptions to employment or schooling, loss of income, or struggles with food, housing and transportation costs and monthly bills.
The majority (88.5%) of fundraisers sought $5,000 or more, with 43.4% requesting $15,000 or more. Most campaigns raised some funds, but only 11.4% reached their fundraising goals during the study interval.
“Although medical crowdfunding gained momentum in recent years and many Americans have donated money online, only a small proportion of patients with cancer and their families may utilize crowdfunding to raise money,” researcher Zhiyuan (Jason) Zheng, PhD, senior principal scientist in health services research at American Cancer Society, told Healio. “However, financial hardships following a cancer diagnosis are common, and medical bankruptcy is the leading cause of personal bankruptcy in the U.S.”
Healio spoke with Zheng about the motivation for the study, the implications of the findings, and next steps in research.
Healio: Prior to this study, what evidence existed about financial hardship among cancer survivors?
Zheng: Prior research has shown that cancer survivors commonly delay or forgo medical care and prescription medication to save money. Moreover, cancer survivors frequently report unmet health-related social needs, such as food and housing insecurity. These types of financial hardships have been linked with higher mortality risks among cancer survivors.
Healio: Why did you conduct this study?
Zheng: There are more than 18 million cancer survivors in the U.S., and about 50% of them experience some type of cancer-related financial hardships. Personal crowdfunding has become increasingly popular for raising money to pay for medical expenses and daily living necessities. However, we knew very little about the reasons for asking financial assistance among patients with cancer who have crowdfunding campaigns. Although the fundraising story provides rich information about the patients’ cancer diagnosis information and financial situation, these data cannot be easily evaluated with traditional quantitative statistical analyses. Manual extraction of information from thousands of fundraising campaign stories is often not feasible. With the rapid advancements in AI, especially natural language processing, we can analyze texts on a larger scale.
Healio: What did you find?
Zheng: In total, we identified more than 91,000 cancer-related crowdfunding campaigns and analyzed more than 24 million words from all fundraising stories. We found that 25.5% explicitly requested financial assistance for out-of-pocket medical costs and 24.1% mentioned health-related social needs. Overall, 35.9% of fundraising stories explicitly mentioned medical financial hardship or health-related social needs.
More specifically, 3.3% of campaigns requested financial assistance for food, 3.7% for housing, 4.5% for monthly bills and 4.2% for transportation. Among fundraising stories about individuals who were working, 15.2% mentioned employment disruptions, 12.6% mentioned income loss and 7.7% mentioned lack of sick leave. Among those stories about individuals attending school, 13.3% of fundraising stories mentioned school absenteeism.
Healio: What can be done to help alleviate these hardships?
Zheng: Programs addressing health-related social needs — such as reimbursements for medical-related transportation expenses, food as medicine and housing assistance — may help patients alleviate some of the financial burden associated with the disease.
Healio: Do you have more research planned?
Zheng: For our future research examining financial hardship among cancer survivors, we plan to follow individuals over time and examine the changes in income, debt and wealth before and after a cancer diagnosis.
References:
- American Cancer Society. One-third of cancer-related crowdfunding campaigns share medical financial hardship and health-related social needs, new research shows (press release). Available at: https://pressroom.cancer.org/crowdfunding-ACS. Published Oct. 10, 2024. Accessed Oct. 22, 2024.
- Zheng Z, et al. JAMA Oncol. 2024;doi:10.1001/jamaoncol.2024.4412.
For more information:
Zhiyuan (Jason) Zheng, PhD, can be reached at jason.zheng@cancer.org.
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