The Cystic Fibrosis Foundation is taking a major step to further improve care for people with cystic fibrosis (CF). Today, the CF Foundation released health outcomes data for all accredited care centers in its nationwide network of more than 115 centers. The information can be found on the CF Foundation's Web site (www.cff.org) under “Care Center Network.” It shows how well patients as a whole are doing at each center, and how the outcomes compare both to national averages and to national goals set by medical experts.
The data includes four measures vital to the health of people with cystic fibrosis:
The CF Foundation's care center network has been recognized by the National Institutes of Health (
“We believe that sharing the data is the right thing to do-it will help us get better faster,” said Bruce C. Marshall, M.D., the Foundation's vice president of clinical affairs, who led the initiative.
Added Robert J. Beall, Ph.D., president and chief executive officer of the CF Foundation: “The aim in sharing the data is to strengthen the partnership between the health care professionals at our care centers and the patients and families they serve. This partnership is important in achieving the best possible outcomes for cystic fibrosis.”
Cystic fibrosis is a life-threatening
“The CF Foundation is one of the first health organizations in the country to make its health
The CF Foundation formed an expert committee in 2004 to guide the process of taking health outcomes data from its care center network and making it public. This public reporting effort is part of a comprehensive quality improvement program launched by the Foundation in 2002 to accelerate improvement in CF care throughout the care center network. The initiative includes training care center staff, providing tools to identify and implement best practices, and building stronger partnerships between patients and families and care center clinicians.
“The history of the CF Foundation is one of continual improvement,” said Gerald T. O'Connor, Ph.D., professor and associate dean at Dartmouth Medical School, who chaired the CF Foundation's expert committee to develop the public reports. “The care centers have done remarkable work improving the
The CF Foundation encourages people with cystic fibrosis and their families to get involved in quality improvement efforts at their care centers. In addition, it is critical for people with CF to maintain their recommended daily health regimen, which can include airway clearance, inhaled antibiotics,
To learn more about the CF Foundation's public reporting, watch an archived Web-cast program “Quality Care is More Than the Numbers.” In addition, people with cystic fibrosis and their families are encouraged to contact their care center if they have questions about the data.