Ben and Julie Buck, from Minnesota, stand by as their 6-year-old son Tanner works with respiratory therapist Cindy Williams of their care center team.
In 2002, the CF Foundation launched an innovative initiative to improve quality at its network of 117 accredited care centers. The initiative has one overriding mission: to help people with cystic fibrosis live longer and better lives.
Quality improvement is a concept well known in the corporate world. Many companies worldwide—from automakers to food producers—use quality improvement principles to create safer and better products. In recent years, health care organizations have begun using these techniques to improve a product that is critically important to everyone: health care.
The Foundation's Quality Improvement Initiative offered an opportunity to accelerate the quality of care provided throughout its network of care centers. This network is already considered a model for how to deliver care for a chronic disease. Our Patient Registry, which tracks CF patient data, shows that health outcomes are steadily improving year after year. At the same time, the Foundation is dedicated to ensuring that this progress continues.
At the beginning of the initiative, the Foundation set forth aggressive goals and developed a plan to achieve them. With the initiative now in its fourth year, more than 90 percent of all care centers are engaged in quality improvement efforts.
Among these efforts, the Foundation has provided state-of-the-art training sessions across the country, focused on helping staff to identify and implement "best practices" for care and on strategies for strengthening the partnership between patients and families and their care teams.
An important first step in quality improvement often involves a care center sharing its health outcomes data with patients and families—and a majority of centers have already accomplished this goal. In December, the Foundation will take another significant step in its effort to improve care. Medical outcomes data for all 117 care centers will be made public for the first time at our web site.
We encourage patients and families to review the data with their care teams and to understand what it means on a practical level."
Bruce Marshall, M.D.
Vice President of Clinical Affairs
This data will show medical outcomes for each center, the national average and aggressive national goals established by medical experts.
The care center data will include four measures vital to the health and life expectancy of people with CF:
- Nutritional status (measured by body mass index)
- Lung function
- Percent of patients screened for CF-related diabetes
- Percent of patients who complete the recommended four clinical visits per year, one respiratory culture and two pulmonary function tests.
"We encourage patients and families to review the data with their care teams and to understand what it means on a practical level," said Bruce Marshall, M.D., vice president of clinical affairs. "By interpreting the data as active partners, they can better work together to improve health outcomes."
By sharing the data, the Foundation hopes to strengthen the partnership between families, patients and care teams—and make care better faster, Marshall added.