Looking under the health care safety net

medical cost graphicTwo UW Bothell faculty members who have been attracting widespread news coverage for their survey of GoFundMe medical campaigns are now taking a closer look at who falls through the health care safety net — and turns to the internet for help with medical bills.

For the next phase of their interdisciplinary research, Lauren Berliner and Nora Kenworthy will be interviewing crowdfunding insiders and the campaigners who seek online help to pay for overwhelming health problems. The researchers want to know how illness and social media intersect. They also suspect their research will reveal inequalities in the health care system.

“What can crowdfunding teach us about our contemporary moment and how we can effectively respond to dramatic changes in our social and economic fabric? Why must one market oneself in this particular moment in time in order to get basic needs met?” Berliner said. “We’re interested in what campaigns are not out there. Who’s not being represented?”

“We’re afraid we’ll reach the point where hospitals tell people, ‘Why don’t you just go crowdfund that?’” Kenworthy said. “We think of this not as a new fad but as a social archive of contemporary struggles that people are facing in U.S. society.”

The professors' 2016 research into 200 randomly sampled GoFundMe appeals, “Producing a Worthy Illness: Personal Crowdfunding Amidst Financial Crisis,” was published in the journal Social Science & Medicine. The study of publicly available information generated stories in news outlets across the country, from Bloomberg to Forbes and The Atlantic.

The findings that resonated most with the news are the same that now serve as the foundation for Berliner and Kenworthy's long-term research:

  •  Ninety percent of campaigns did not reach their financial goals. Campaigns raised an average of just over $3,000.
  •  Most appeals failed to go global, mostly just reaching existing social contacts.
  •  A higher proportion of appeals for charity came from campaigners in states that chose not to expand Medicaid under the Affordable Care Act.
  •  Success favored the social media savvy who were able to pitch a specific problem.
  •  Many of the overwhelming medical-related costs were not for treatment; during a crisis, people also asked for help paying for travel, rent or utilities.

Health, finance, politics and social-media marketing. The research crosses multiple disciplines — and that’s part of the reason the two faculty members decided to work together.

Nora Kenworthy, Lauren Berliner

Nora Kenworthy and Lauren Berliner. Marc Studer photo.

Berliner is an assistant professor in media and communication, and cultural studies in the School of Interdisciplinary Arts & Sciences. Kenworthy, a medical anthropologist, is an assistant professor in the School of Nursing & Health Studies. They intentionally took the cross-disciplinary approach that is one of the hallmarks of UW Bothell. 

“It’s been a topic that leverages our diverse experience and expertise in really interesting ways,” Kenworthy said.

“We realized what is interesting about this research is the intertwining of the digital, the online, health inequities and those broader questions of economic and social upheaval,” Berliner said.

Some of the concepts in the research also figure in new books they have written individually: Kenworthy’s “Mistreated: The Political Consequences of the Fight Against AIDS in Lesotho,” and Berliner’s “Producing Queer Youth: The Paradox of Digital Media Empowerment.”

Their medical crowdfunding research is funded by the UW Simpson Center for the Humanities, the UW Population Health Initiative and the UW Royalty Research Fund, which funded student researchers Jessica Cole (Master of Arts in policy studies) and Chelsea Rios (Bachelor of Arts in health studies). The School of Interdisciplinary Arts & Sciences funded student researcher Emily Fuller (Master of Arts in cultural studies).