A recurring theme at the 2010 North American Cystic Fibrosis Conference was the key role of people with CF and their families in improving CF care.
In recent years, care centers across the country have adopted a new approach, known as patient- and family-centered care, which aims to actively involve people with CF and their families as full members of the care team.
“In patient- and family-centered care, you include the perspective of the person with the illness and his or her family to make sure you address their concerns,” said Elizabeth Tullis, M.D., director of the adult cystic fibrosis program at St. Michael's Hospital in Toronto.
An example of the new approach is the growing number of CF care centers that have created advisory boards made up of people with CF and their families, who partner with the care centers to identify priorities and problems and work together to find solutions.
At St. Michael's, Dr. Tullis explained, this information feeds back to the care center's quality improvement team. In 2002, the CF Foundation launched its Quality Improvement initiative to standardize and improve CF care by using best practices and benchmarks throughout the Foundation-accredited Care Center Network.
“Our goal has always been to increase the life expectancy of people with CF and improve their