University of Vermont Assistant Professor of Pediatrics and Vermont Child Health Improvement Program (VCHIP) faculty member Valerie Harder, M.H.S., Ph.D., knows that managing medications, doctors, and appointments can amount to a full-time job for parents of children with special needs.
“As you can imagine, the families are overwhelmed” with keeping track of details about their child’s treatments, medical records and health histories, says Harder.
About 15 percent of all children nationwide have special healthcare needs, according to a 2010 survey.
Now, with the help of a federal grant and the latest technology, she and her VCHIP colleagues have developed a solution: the Electronic Shared Plan of Care (e-SPoC), a unique system that provides the type of central clearing house that families of kids with severe medical complexities or serious emotional or behavioral problems have yearned for.
The e-SPoC system collects and organizes records from multiple caregivers using a software platform designed by ACT.md, a Boston-based technology company. VCHIP will test the system and measure expenses and outcomes over two years under a $100,000 grant from AcademyHealth, a national health policy research organization, through its federally-funded Community Health Peer Learning Program (CHP) to encourage solutions for increased sharing of healthcare data. VCHIP’s is one of 10 funded CHP participant communities across the U.S.
VCHIP’s goal is to enhance the quality of maternal and youth healthcare statewide, and as part of that, to not only save families time and aggravation, but ultimately to improve outcomes for the patients.
“This program aims to get the information that the families and the healthcare practitioners would need out in an accessible space,” Harder says.
The e-SPoC idea started when VCHIP launched its Pediatric Care Coordination Learning Collaborative, which established care coordinators for 25 families within nine pediatric, primary care or family medicine practices. The coordinator is the family’s point person who communicates with specialists, makes appointments and connects with all others – social workers, school representatives, financial services, community support programs – assisting the special-needs child
While creating these plans, coordinators were struggling to figure out how to share them with families and among healthcare providers, Harder says. One problem was the federal privacy rules regarding medical records. Another was the logistical challenge of updating and tracking the ever-changing information.
Many physician practices have converted to electronic medical records, but not all are fully accessible, Harder says. Instead, some coordinators simply put their care plans on paper.
ACT.md’s technology enables both the required protection of information and the means to organize and disseminate it to users.
“We were looking for a software platform we didn’t have to build,” Harder says.
The company’s template allows clients flexibility. VCHIP is now customizing e-SPoC, responding to feedback from families who requested ease of use and interactivity. Some wanted to scroll through the child’s medical history on the spot, others to quickly retrieve medication and immunization information in case of emergency.
A multimedia function will allow parents, for example, to chat with a social worker or share video of the child’s behavior with an expert, Harder says.
The project will be piloted beginning in summer 2016 at three primary care practices in Vermont.
Harder shared that a family health partner on the project expressed that she would love to have e-SPoC for her non-special-needs child also. Using this type of technology to improve efficiency and outcomes could easily translate across the entire healthcare system, admits Harder.