CHAMPIONS OF CHANGE

Opening the Doors to Family Driven Improvement

Jim Lang and Honor Page have heart-wrenching burdens. Both are parents raising children with cystic fibrosis (CF). The outlook is grim, which makes their commitment to securing quality health care for their kids that much more critical. The staff at Cincinnati Children’s Hospital has invited parents like Jim and Honor to take an active role in helping create the best care possible.

Cincinnati Children’s Hospital is an internationally renowned pediatric medical Center. Concerned about clinical outcomes for Cystic Fibrosis (CF) patients, the institution has embarked on an ambitious redesign of both inpatient and outpatient care. The hospital’s effort is led by Dr. Jim Acton, Director, Cystic Fibrosis Center.

“How do we get to where we don’t have deflects or flaws? The first step is obviously admitting or acknowledging that we have them. That we aren’t perfect. That there may be better ways to do what we’re doing,” says Dr. Acton describing the first steps toward improving the quality of care for his patients.

More than admitting or acknowledging problems, the hospital is committed to doing something about its shortcomings. And, they are involving parents like Jim Lang and Honor Page whose children have the very most at stake.

When the hospital initially embarked on its redesign project, they struggled with how best to involve patient families. The fundamental question was whether families should be treated as a “sounding board” or advisory panel or should they become full team participants. The idea of involving families in discussions where hospitals errors would be readily apparent was a difficult decision but one Dr. Acton and his colleagues knew had to be made. They took the bold step of welcoming twelve families, including Jim Lang and Honor Page to the table.

“They rolled up their sleeves, they told us that not only did they support what we were doing in providing their children’s health care, but they wanted to help us make it better,” said Dr. Acton explaining the active engagement of the families on the design team.

Joining the redesign team was not an easy step for the parents either.

“I can see where transparency would cause a lot of fear both on the side of care givers and the side of families and patients because it’s really addressing where there might be some flaws. But the team did a great job of making us feel comfortable and letting us know that what we thought mattered. Being involved in this project probably makes me have higher expectations for Annie’s care. Because I think I know what can be accomplished and I’m willing to help make that happen,” said Honor whose daughter Annie is a CF patient.

“If we don’t see results our time is being wasted, where we could have more time to be home with our kids that might die within a few years, you know. We want to keep them alive as long as possible. We want them to have the best health care that we can and some of us have made the decision to help as much as possible to get a better health care system,” said Jim Lang who has also made a commitment to be directly involved in efforts to improve care for his children.

Empowering families to help redesign medical delivery systems is a major transformation for any health care institution. For Cincinnati Children’s Hospital, it is the essential first step in the journey to improve the quality of life and increase the lifespan of children with cystic fibrosis.