Pilot Program to Help CF Families Navigate Care Systems Reports Initial Success

ACT.md recently reported positive preliminary results from a multiyear project — in partnership with Boston Medical Center and Baystate Health — using the company’s “Collaborative Consultative Care Coordination Program” (4C) to measure improvements in quality of life, family engagement, and healthcare costs for children affected by medically complex conditions like cystic fibrosis.

First results indicate that the program is successful in connecting a multitude of complex networks, designing individualized care plans at lower cost, and engaging families with multidisciplinary care teams. More than 100 families were reported to be using ACT.md to communicate with health specialists, update care plans, and schedule appointments, tasks that help in meeting the challenges of continuous pediatric care.

The rate of children with medically complex diseases is growing about 5 percent annually in the U.S., partly due to the improved medical care and clinical advancements for those born prematurely and with conditions like cystic fibrosis and congenital heart disease. Increasing numbers of these young patients, however, also increase demands for complex healthcare approaches, with heavy financial and emotional costs to families. Seriously and chronically ill children account for an estimated 30 percent of total pediatric health costs in the U.S., according to a press release.

A government agency called the Center for Medicare and Medicaid Innovation funded the multiyear collaboration, named “Massachusetts Alliance for Complex Care” (MACC), a care model that aims to improve child and family health and quality of life while reducing the economic burden of care.

“The number of children with complex, long-term medical needs is growing, and many of these children require care and attention 24-7,” Jack Maypole, MD, a co-principal investigator and complex care pediatrician at Boston Medical Center, said in the release. “This team-based approach with help from ACT.md’s tools leads to improved care, more time at home and in school, less time in the ER or hospital, less family stress, and overall savings in health care costs.”

Preliminary results also found that scores measuring quality of life at many levels, such as physical, emotional, social, educational, and psychosocial, are improving with the system, and early indications showed significant cost savings, above the 20 percent savings that is the program’s target.

“Children with special health care needs and their families too often face a fragmented healthcare system that provides inconsistent or inadequate care,” said Ted Quinn, ACT.md CEO. “Thankfully, MACC is changing the way the country delivers complex pediatric care. We believe that the MACC team and care teams everywhere deserve the best care coordination technology on the market, so we built it for them and we’re honored to be a part of this great work.”