Patient and Family Engagement

Patient and Family Engagement

We consider patient and family engagement to be one of the most important and distinguishing tools in NICHQ’s tool belt. The reason is simple: system improvement should be driven by the needs of those served by the system, the people who are most closely affected by the system’s performance. Patients and families have an insider perspective on how the current system affects them personally and therefore offer a unique and invaluable viewpoint on what steps can be taken to improve the system. Their observations and recommendations are almost always different from the people “in the system.” Since the system exists to meet their needs, it is critical that their voice be heard and leveraged.

From day one at NICHQ, we have pioneered the active participation of parent partners on improvement teams to effectively advance children’s health. We have insisted that our improvement teams include active participation from patients and families to help create meaningful and sustainable change. By including parent partners alongside providers and professionals in quality improvement work, teams have been able to better target efficient, meaningful and sustainable improvements.

Engaging patients and families is not always easy for a quality improvement team, but we have heard time and time again from providers and parent partners that the experience of working together has been invaluable from all perspectives. Through the following resources, you can hear from providers and parents alike and judge for yourself about the value of actively engaging patients and families in improvement work.

If you’d like assistance on how your practice or organization can better partner with families and patients to create meaningful long-lasting change, please contact us at



  • In this NICHQ video entitled, The Value of Parent Partners, hear from providers, administrators, and parent partners themselves about the value of including parent partners in quality improvement work.
  • Helen Cotton-Leiser, a parent partner in NICHQ's Improving Hearing Screening and Intervention Systems (IHSIS) project, shares her story of her two daughters' hearing loss diagnoses.
  • Shelly Armstrong, a parent partner in NICHQ's Collaborative to Improve Care for Children with Autism Spectrum Disorder, recounts her son's diagnosis of autism spectrum disorder (ASD).

Why I Participate Stories

Read the powerful experiences of other NICHQ parent partners in our Why I Participate series, including:

  • Tonya Bowman shares her experience of having a daughter with hearing loss
  • Trang Neimetz faced challenges with breastfeeding and advocated for improved breastfeeding support for families
  • Wendy Hewitt was sent through a complex maze of specialists to get her son the care he needed for his hearing loss
  • Olga Cappas shares the story of raising a son with disabilities and why a medical home is so important (Spanish version)


The Value of Parent Partners (Video)

Watch the following video to hear from providers, administrators, and parent partners themselves about the value of including parent partners in quality improvement work.