Crowdsourcing pinpoints unmet needs in eczema research

The topics tackled in the atopic dermatitis literature are not always in line with what parents need to optimally care for their children who suffer from the moderate-to-severe forms of the disease, according to a commentary published July 14, 2016, online, in the International Journal of Dermatology.     

There’s a great need in atopic dermatitis to conduct more patient-centered research, addressing such things as concerns about long-term steroid use, optimal use of moisturizers and ointments and questions about diet’s association with eczema, according to the commentary’s lead author Korey Capozza, M.P.H., whose son has moderate-to-severe eczema.      

“A lot of research is looking at the basic science: Questions around genetics or … microbiology questions related to skin,” Capozza says. “But some of the issues that parents are interested in are actually much more practical. Yes, we’ll never understand how to cure eczema without the more basic research, but there’s also this other need for practical research that’s relevant to patients.”

Capozza, who helped to launch the 860-member international Global Parents for Eczema Research organization, authored the commentary with the help of two university-based informatics researchers. To gauge the topics of highest interest among those in the severe-to-moderate eczema community, the researchers used a cost-efficient, broad-brush computer technique called topic modeling. The technique helped them summarize patient and caregiver chatter from seven online atopic dermatitis social networking sites. The technology analyzed and grouped free-form patient commentary from about 10,000 online posts. The result was 37 topics that stood out, including the top three, starting with issues related to topical treatments, such as moisturizer and ointment use; concerns with side effects of steroid treatment; and queries about the connection between diet and eczema. 

The researchers then looked at whether the topics of concern among parents were in line with what’s covered in the research literature. They applied the topic modeling approach to glean topics from recently published research on atopic dermatitis in a PubMed database from April 2011 to October 2014-the same timeframe they used to study social media chatter on the topic.

Capozza and colleagues found that 70 percent of the topics that were top of mind among patients and caregivers of children suffering from atopic dermatitis were rarely found in research abstracts. Rather, topics concentrated among a few topics, such as skin immunology, risk factors, pathogenesis and studies of topical treatments. In fact concerns about side effects of steroids and other creams, which had a prevalence of 17 percent among parents of children with eczema, were covered in about 1 percent of the abstracts.

The crowdsource study, Capozza says, is an opportunity to ask: How do we bring these two groups-parents and researchers--together so that research isn’t occurring in a vacuum, divorced from the needs of patients and families?

“My interest in the topic and the crowdsource study is really born out of my experience of caring for my son, and finding, with his care, that there’s still a lot of confusion … about how to optimally treat him,” Capozza says.

Crowdsourcing helped the researchers tap thousands of comments, eliminating the painstaking and often expensive approach of finding patients and families with the relatively rare moderate-to-severe form of eczema and surveying them.

“My son has never met another kid with moderate to severe eczema, but social media changes that. You can connect across very large geographies where people and families are going through the very same things. This affords a very large scale view of what’s going on for patients with rare conditions,” Capozza says. “Parents on these sites talk about things they’ve tried, problems they’re having, experiences with treating eczema….”

Next: Upcoming goals for Global Parents for Eczema Research

Building on this work

Global Parents for Eczema Research aims to bridge the gaps in research.

“Our goal is really to partner with researchers and dermatologists on patient-centered research,” Capozza says. “So, we’d like to work with the great minds out there that really know how to do rigorous research and look at some of these issues and questions that are high priorities to patients.”

Korey Capozza and her son Elio

There is money available for patient-centered research. A provision in the Affordable Care Act of 2010 resulted in the Patient-Centered Outcomes Research Institute, which oversees an annual budget of $462 million and is fueling new research that involves forming research questions based on feedback from patient communities. Global Parents for Eczema Research was selected for a Pipeline to Proposal award by the Patient Centered Outcomes Research Institute in 2015, which is designed to build the community of patients, stakeholders and researchers who can participate in patient-centered outcomes research, according to the group’s website.

“We have workgroups going on around some of the priority areas that we’re interested in. We also want to get the input of dermatologists and other clinicians … because they’re on the frontlines and are having regular conversations with patients and families about the issues they’re facing and the needs that they have,” Capozza says. “We are open and eager to have new parents and clinicians support our group.”

Global Parents for Eczema Research has set specific goals for research and intends to secure partnerships with researchers and clinicians in the next two years, according to Capozza.

For more information, see the Website: www.parentsforeczemaresearch.org,

The group also has a Facebook page at:

https://www.facebook.com/groups/parentsforeczemaresearch/.

Reference: Capozza K, Shao Y, Zeng Q. "Crowdsourcing" a patient-centered research agenda for pediatric atopic dermatitis. Int J Dermatol. 2016 Jul 14.