Parents of children with chronic conditions want to have a voice in their children’s treatment plan, both to understand options and, in many cases, to help find new best practices by participating in quality improvement activities. By offering their perspective on what their child is experiencing and how it affects the entire family, they can help improve the quality of child health care.
Power of the Parents
Recognizing the importance of parents’ roles in children’s health care, the American Board of Pediatrics (ABP) has established a new committee, called the Family Leadership Advisory Group (FLAG), who serve as parent representatives to several other ABP committees, including the ABP Board of Directors. Public members have served on ABP committees since 1979, but these new members specifically bring the parents’ perspective. All of these people bring the perspectives of parents and the public. Most also have children with chronic health conditions and are associated with a Collaborative Improvement Network. These networks link physicians with other health care providers who are treating patients with specific diseases and conditions, and with the patients’ families.
“These parent advisors have a strong understanding of board certification and, in particular, quality improvement activities,” says ABP President and CEO, David G. Nichols, MD, MBA. “Through their experience caring for a child with a chronic condition — with so much of their lives entwined with the health care community — they help us stay focused on our mission to set standards of excellence for pediatricians.”
Diane Pickles, a parent who serves on the ABP Board of Directors, has a son who was born in 1994 with hypoplastic left heart syndrome (HLHS) and aortic atresia. Jake is thriving as an adult now. Pickles says Jake’s care team listened to his family’s perspective, and she believes their voices improved his care. She explains, “I think I’ve become a pretty savvy parent, but that’s only after living 21 years through an awful lot of care delivery.”
That same experience and perspective has made her a valuable parent leader in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC).
Jeffrey Anderson, MD, MPH, MBA, a pediatric cardiologist at Cincinnati Children’s Hospital Medical Center and recipient of the 2016 Paul V. Miles Fellowship in Quality Improvement, is the Cardiology Lead for the NPC-QIC.
He says that clinicians, centers, parents and “anyone trying to improve health care” will be more successful much sooner if they work together.
Pediatricians Partnering with Parents
Many pediatricians already involve parents in the care of their patients, with excellent results. For example, Vineeta Mittal, MD, MBA, in the Department of Pediatrics at the University of Texas Southwest Medical Center has practiced family-centered rounds with pediatric trainees for several years.
“The residents get to see the attending [physicians] talking with families,” she says. “This is a very effective way for residents to learn compassion, dignity, respect. You can’t teach these professionalism skills in the classroom. And the parents are very happy to see the residents working with the senior people as a team. The families feel like they are contributing to the education of the next generation and helping them understand the families’ perspectives and needs.”
It is only natural, then, that the ABP also could benefit from including parents in discussions about certification standards.
“Parents bring a new level of energy to the committees on which they serve and have provided the ABP with closer links to the powerful work being done by collaborative networks,” says Christopher Cunha, MD, a general pediatrician in Crestview Hills, Kentucky, and 2016 Chair of the ABP Board of Directors.
“The addition of parents is one of the most important things that has happened at the ABP,” Dr. Cunha says. “Their stories inspire and focus us. Patients and parents provide valuable feedback to the Board about what outcomes matter to them and help to focus work around communication, quality and safety.”
Parent advisors to the ABP have encouraged the Board to educate all parents about board certification so they understand how much effort pediatricians put into earning and maintaining their certification. While certification is not the only factor parents consider when choosing a doctor for their children, it does assure parents and patients that a pediatrician is making the effort to keep up to date and improve the quality of the care they deliver.
Parents also helped the ABP develop a website — MyCertifiedPediatrician.org — to explain to parents and the public what certification is and what pediatricians do to earn and maintain their certification. The site also includes resources that physicians can use in their offices to distinguish themselves as being certified.
“I believe that while the partnership between parents and the ABP is still young, it has resulted in some shifts in thinking and approach by the ABP,” Pickles says. “It is hugely significant that parents have been given a seat at leadership tables within the organization — Board of Directors, Foundation Board of Directors, and other key committees. My hope is that this will lead to a much deeper culture shift within not just the ABP but within pediatrics.”
ABP Family Leadership Advisory Group Members
ABP Board of Directors
Diane M. Pickles
ABP Foundation Board of Directors
Stacey L. Lihn
Maintenance of Certification Committee
Tara B. Rouse
Research Advisory Committee
Kathryn A. Sabadosa
Three other family leadership advisors have been appointed to join committees in 2017:
Conflict of Interest Committee
Amy L. Kratchman
V. Robyn Kinebrew
New Subspecialties Committee