The cost of whole exome sequencing has fallen rapidly, but even though it can represent the fastest path to a clear diagnosis for patients with a rare genetic disease, the cost remains prohibitive for many families and one that is not typically covered by health insurance.
Whole exome sequencing examines all of the protein-coding genes of a patient. Though this represent less than 2 percent of the genome, it is here that most mutations that drive genetic diseases occur. One way families in need of whole exome sequencing have sought to address the financial gaps they face is to turn to crowdfunding and launch Internet-based campaigns to have friends, family members, and other bridge the financial gap through donations.
Families trying to get a diagnosis for a rare disease often face the financial strain of a steady stream of medical costs. Even without such pressures, most people are ill-prepared to bear such an unexpected expense. A 2011 poll from the National Bureau of Economic Research found that nearly half the respondents were unable to produce an extra $2,000 in a 30-day time frame.
Now a study published in the Interactive Journal of Medical Research from authors at the Rare Genomics Institute seeks to identify what makes some crowdfunding campaigns for whole exome sequencing successful where others fail. The Rare Genomics Institute is a nonprofit that helps families pursue personalized research projects for diseases not otherwise studied by providing access to a network of experts and an online crowdfunding mechanism.
The study, “Engaging a Community for Rare Genetic Disease: Best Practices and Education from Individual Crowdfunding Campaigns” is unusual in that few studies have examined what it takes to put together a successful crowdfunding campaign. In fact, the authors found just one previous study that focused exclusively on crowdfunding to meet personal medical expenses. And while several studies found a correlation between crowdfunding and a reduction in the rate of medical bankruptcies, they failed to examine why people donated, or look for commonalities in the elements of a successful campaign.
The Rare Genomics Institute created Amplify Hope, an educational program designed to understand and educate people about what makes a medical crowdfunding campaign successful. For the study, it provided a series of interviews on crowdfunding to determine best practices, provided training to a group of individual hoping to run medical crowdfund campaigns to pay for whole exome sequencing to diagnose a genetic disease.
Of 86 inquiries, 11 participants submitted the required forms for the study and launched crowdfunding campaigns. All of the campaigns were launched on the same date after 30 days of training. The goal was to raise $5,000 within 30 days.
Though it was not a large sample size, the study did draw some conclusions about common elements of successful campaigns. Of the 11 participants in the study, four reached their $5,000 goal within the 30-day period.
A best practices guide was created based on interviews with crowdfunding platform founders and people who had conducted successful campaigns. The guide was used to train participants and available for free download from the Rare Genomics site.
The best practices include having a “pre-game plan” that sets a measurable goal, and creating a message and strategy to target your community. It calls for campaigns to arrange initial commitments, create media including high-quality photos, a video, and written materials. It also suggests holding a launch party, providing regular and detailed updates, use of social media daily and reaching out to media contacts. Campaign organizers, it says, should also seek and act on feedback.
The successful campaigns did share some common elements. The successful organizers were more engaged during the training, read and followed the educational materials, and reached out to their networks through phone calls and emails prior to launch. “In other words,” the authors write, “the successful campaigners frontloaded their campaigns.”
In addition to providing updates throughout their campaigns, the successful fundraisers used social media as an important way to connect to donors during the campaigns. Many donors learned of a campaign through Facebook. Family and friends were the top sources of donation, reflecting the critical role having a strong social network in place plays in the success of a crowdfunding campaign.
Donors tended to be women with at least a college education. Donors were also more likely to give to a campaign that was close to a deadline and had not yet reached its goal.
“Although crowdfunding has become a more popular means of donating in recent years, there is still a stigma associated with asking friends and family for donations for personal medical causes,” the authors write. “We found that to be successful, the campaign organizer should participate in the process of outreach and have a higher degree of comfort with social networking as reported by the study participants.”
As with other things in life, though, it’s good to have friends.
February 14, 2018