Nearly 1,000 Tuned in to Web Cast on Quality CF Care
December 5, 2006

Nearly 1,000 people tuned in to watch the Cystic Fibrosis Foundation’s latest Web cast—“Quality CF Care Is More Than the Numbers”—on Nov. 28.

Improving patient care is a "problem-solving process" and that process was discussed in a no-holds-barred conversation between Don Kreis, the father of a five-year-old with CF, Dr. H. Worth Parker, CF adult care program director at Dartmouth-Hitchcock Medical Center, and Dr. Bruce Marshall and Leslie Hazle from the Foundation. The group talked about the patient/family – healthcare provider partnership and how important it is for everyone to work together to effectively solve problems and improve CF care. The successful team is "more we, than me," said Dr. Parker. 
Care centers and CF patients and families are always striving to accelerate quality care— and by setting "stretch goals, the bar keeps getting higher,” said Bruce C. Marshall, M.D., vice president of clinical affairs at the CF Foundation. In mid-December, the Foundation will release CF care center data on a number of health measures for the first time. It is important to note, however, that the care centers and the CF Foundation have been focused on a comprehensive quality improvement initiative for years. One effort is to provide the CF community tools (e.g., letter templates, success stories, etc.) to help inspire action and get involved in improving CF care at their center.

When the data becomes available, Kreis hopes others will see it as a win-win opportunity for patients and their families, as well as the care center to improve care. "You can achieve what the best centers achieve at your care center," he said, "Asking the difficult questions of your care team and getting answers will help make the changes you want together." 

Because about 98 percent of CF care takes place outside of the care center, "self care" is the ultimate goal,” said Parker.
Many centers have established patient-family working groups to strengthen their partnership, identify areas for improvement and to make change happen. Dr. Parker said that families come energized to make changes, and that the data has a way of "igniting" the care center, who have the expertise about the medical systems and how to practically implement them.
According to Dr. Marshall, the CF community is tapping into the incredible talents of the patients and their families—from writing newsletters to setting up peer-to-peer counseling.

The patient educational Web cast was produced by the CF Foundation, and funded by an unrestricted educational grant from Genentech, Inc.

Click here to see an archive of all Web casts produced by the Foundation.

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