Roadmap Hosts the Patient and Parent Advisory Group (PPAG)

The Roadmap Project hosted calls with the Patient and Parent Advisory Group (PPAG) in March. Following the call, members shared some helpful feedback. 

"The Roadmap Project is an effort to help not only the patient but their families as they navigate chronic illness. Having a program that guides medical teams to communicate and normalize discussing emotional health is essential to improve outcomes." —Tasha Firoza Faruqui, parent

"There are so many ups and downs in the stages that you go through (as the parent of a child with a chronic condition). I needed to have those experiences normalized because it feels really isolating when you're in the thick of it." —Amy Ohmer, parent

As Roadmap continues to collaborate with patients and parents to better understand and support their needs during routine care, additional resources will be updated and/or made available.

NYU: From Idea to Implementation to Spread

Spreading useful techniques and resources through the Roadmap Project is key to providing equitable and excellent care in a clinical setting. Dr. Mary Pat Gallagher​, MD, Medical Director, Ambulatory Care Center ​at Hassenfeld Children’s Hospital at NYU Langone and team member of the Roadmap Pilot Collaborative is leading the charge in her network. Along with her colleague Becky Lois, PhD, Dr. Gallagher has begun an intentional dissemination effort to spread Roadmap strategies through Hassenfeld Children’s outpatient subspecialty clinics and ensure that patient and family emotional health is reliably assessed. 

"The intervention is listening and partnering with the families and their experience. Letting them know they are not alone, that you're there, that you're listening," says Dr. Gallagher. "A big piece of being successful and continuing this work, is tracking and monitoring. What's measured gets managed. Ninety percent of the time, the medical provider listening and validating the families' feelings was the intervention."

The Roadmap Project is made possible with support from the American Board of Pediatrics Foundation and the David R. Clare and Margaret C. Clare Foundation.