People have been crowdfunding for years. Now researchers are doing the same, so you can contribute ideas and money to the studies that matter to you.
Do you wish more research could be done about a certain health condition? Thanks to a new tool, you can gather your network and make it happen.
The University of Michigan Health System is crowdfunding research from ideas that were suggested by the public with a new platform called WellSpringboard.
WellSpringboard allows anyone to submit an idea. Once a U-M researcher agrees to take up the idea, it’s time for the public to donate online, volunteer to be contacted to possibly take part, or share it with their networks.
“This is a great way to get together as a community to address what our patients are passionate about,” says Peter Higgins, M.D., Ph.D., a gastroenterologist who specializes in inflammatory bowel diseases. He was one of the first researchers to write a proposal for a WellSpringboard idea.
An idea for IBD research
Take Eric Polsinelli, who explains his idea in the video below. He struggled with his inflammatory bowel disease up until he got an ostomy.
“It was a challenge to do anything,” Polsinelli says. “Losing control of your body and your life is difficult.”
When he heard about WellSpringboard through Higgins, Polsinelli thought it could be a way to find patient information backed by evidence.
“A lot of what you find online is anecdotal or pseudoscience,” Polsinelli says. “I’d like to see research that shows evidence of what you can do to improve your physical or mental health while dealing with IBD.”
Higgins works to improve the quality of life for those with IBD, so it was the perfect match.
“This is a project we’ve been pondering for a while,” Higgins says. “Flares come out of the blue and disrupt patients’ lives, so we’re going to incorporate an activity tracker to see if it helps identify when someone is at risk for a flare.”
Higgins’ proposal will involve recruiting subjects who have recently had a flare of IBD and started on steroids. He’ll study dozens of patients with IBD and outfit them with a fitness tracker.
He wants to measure heart rate because patients with IBD tend to have higher heart rates during flares, sleep because it’s difficult to sleep during a flare, and steps because it’s difficult to find the energy to be active during a flare.
“We thought an activity monitor might be able to measure those subtle changes in sleep, heart rate and activity that occur before a flare begins,” Higgins says. “If it works, we may be able to help IBD patients know when a flare is coming, allowing them to address these warning signs with their IBD doctor before the clinical symptoms of a flare begin.”
Another project: Home CPAP and infections
June Insco has a CPAP machine for her sleep apnea, a condition that affects 10 to 20 percent of Americans. She heard about WellSpringboard, and it made her think of a concern she’s had for some time about the machine that helps her keep breathing throughout the night.
“I didn’t get a lot of good instruction up front about cleaning it, and even though I do clean it every week, it sometimes has a musty odor,” Insco says. “CPAPs are a fairly new phenomenon, so I wonder what kinds of studies have been done on the long-term effects of using them, particularly with respiratory issues.”
When Tiffany Braley, M.D., M.S., a neurologist whose research focuses on sleep and its relationship with the immune system, saw Insco’s request, she knew she could investigate. Braley explains her proposal in the video below.
“It was a topic I’ve been asked about before, but I hadn’t considered researching this important issue until June’s WellSpringboard request came through,” Braley says.
Braley’s project will examine electronic medical records of 4,000 patients with obstructive sleep apnea who started using CPAP at U-M. She’ll evaluate upper respiratory infection rates in patients before and after they start CPAP, to see if CPAP use leads to changes in infection rates.“CPAP is the most effective way to treat sleep apnea, but only about half of patients actually use this treatment regularly,” Braley says. “Concern about infection may be a barrier to regular CPAP use. If funded, this project will allow us to investigate a potential barrier that may be discouraging some patients from using CPAP, and provide vital information about the safety of CPAP treatment.”
Funding in process
The first two projects have begun funding. Each idea, once paired with a research project, has 30 days to reachits fundraising goal. Both are from the five initial priority areas, which include:
Children’s heart disease
Inflammatory bowel diseases, such as Crohn’s and colitis
If they reach their crowdfunding goals, the researcher will receive the money and can get started on the research. If a project doesn’t meet its goal, the donations will be used to support other WellSpringboard research in the same category. The site is still taking research ideas, even as matched ideas begin the funding process.
“We hope that the innovative combination of crowdsourcing research ideas, and crowdfunding the ones that researchers agree to study, will prove successful and be a model for other academic medical centers and research institutes,” says Matthew M. Davis, M.D., the U-M physician and researcher who leads the team that helped WellSpringboard get off the ground.
Kara Gavin contributed to this report.