Parents, Sick Children, and the Network
Justin Vandergrift and his wife’s lives changed abruptly in August of 2011, when they rushed their daughter Kathryn to a North Carolina pediatrician. Eleven-year-old Kathryn had just been diagnosed with Crohn Disease. At a follow-up appointment a week later, the Vandergrifts were offered the opportunity to join ImproveCareNow Network. The ImproveCareNow collaborative, uniting 50 teams, focuses on two specific efforts: to develop a Collaborative Chronic Care Network, and to support a data collection system to help drive improvements in care for children with Crohn disease and ulcerative colitis.
A nurse practitioner explained to Kathryn’s parents that information about how she was doing could be shared anonymously with others participating in the ImproveCareNow Network so everyone in the network could help identify best practices to improve and standardize care.
“I signed that consent form,” Justin said. “I knew they were doing things behind the scenes.”
Justin later traveled with his local site team to an ImproveCareNow learning session, which brought together teams from around the country involved in the network. Each team included physicians, nursing staff, researchers, and parents – all sitting at the table together, sharing their invaluable perspectives.
“I really came back from the learning session knowing that the physicians actually cared about what our opinion was,” Justin said.
Dr. Ashish B. Shah, an ABP-certified pediatric cardiologist at Arizona Pediatric Cardiology Consultants, said the importance of patient involvement is one of the most influential lessons he’s learned since becoming active in his network, the National Pediatric Cardiology Quality Improvement Collaborative.
“Incorporating a diverse group of families enhances the collaborative process,” Dr. Shah said. “These are the people you are caring for. And if you’re not communicating effectively with that group, then you cannot expect to be successful in caring for the patient.”
The National Pediatric Cardiology Quality Improvement Collaborative focuses on improving outcomes for children with cardiovascular disease.
Learn more about the National Pediatric Cardiology Quality Improvement Collaborative, including participating sites.
Having completed a dual medical/business degree while in medical school, Dr. Shah recognizes the value in standardizing care.
“What if the way you’ve been doing it all along isn’t the best way?” Shah said. “In a collaborative, what can you learn from other places, what can you learn from your own internal failures to do better? Maybe we’re doing something really good and we don’t know it, but now we can find out because we can share our data, ideas, and processes.”
This is particularly valuable when the number of specific cases is limited. By uniting different sites throughout the country, networks are able to “experience” more cases, share more data, and learn how to improve the care they deliver. This knowledge is then diffused throughout the participating network sites.
Justin, like other parents and caretakers, also sees how the work of the collaborative impacts Kathryn directly.
“All of these people at all these care centers are inputting data into this database, and it all comes down to a point,” Justin said. “You’re getting this huge funnel of information and knowledge sent directly down to my child when she needs it.”
“That funnel of knowledge, I think, is remarkable,” Justin said. “I get all this knowledge poured through the data down to my child. It’s remarkable to see that standard of care.”
This is only achieved by each team’s willingness to remain transparent in sharing both their failures and successes.
“You learn that the process you may be accustomed to is not the best,” Dr. Shah said. “However, by taking bits and pieces of successful processes, you can improve upon your existing system.”
Teams must also be willing to resist the urge to hoard knowledge and expertise, recognizing that the ultimate goal is to improving the care and treatment of children in a more collaborative manner. It is a cultural shift taking place in what has always been an extremely competitive field.
The third and possibly most influential necessity is the parent-patient involvement. “Parent involvement is huge,” Dr. Shah said. “You can say anything as the doctor, but if the family cannot do it or doesn’t buy into it, you achieve nothing.”
Collaborative networks help not only by bringing the family to the table in a conversation with the medical team but also by offering a sense of community for the patients and caretakers.
Since his daughter’s diagnosis, Justin has taken an active, engaged role in Kathryn’s care. And he has encouraged other parents in his situation to seek out and become involved in these networks.
“The sharing of data to standardize care is so important. I need to know as much as possible,” Justin said. “The only way to do that is to get involved in some organizations like the collaborative.”
Dr. Shah shares his passion for understanding the value of these networks. “
Your baby is part of a network of similar babies across the country,” Shah said. “We’d like you to participate because what happens for you and your baby becomes a learning experience for us so we can…improve quality of life.”
The American Board of Pediatrics (ABP) helped support the development and launch of the ImproveCareNow and National Pediatric Cardiology Quality Improvement Collaborative Networks, as well as other similar learning networks.
Through these learning networks, diplomates of the ABP can engage in collaborative quality-improvement efforts while also earning MOC credit.
If you are a diplomate of the ABP interested in earning Part 4 activity points through participation in collaborative networks, please browse the multiple individual and team-based collaborative network activities available by visiting your ABP Portfolio and using the Part 2 and Part 4 Activity Search.
This is what I think. If you would like to let me know what you think, please leave a comment below.
David G. Nichols, MD, MBA
President and CEO