In the fall of 2008, the Adult CF Program staff and several adult patients assembled and convened the Adult Advisory Board. The Board was formed to address topics of particular concern to the adult CF community and to complement the activities of the PFAB (Patient/Family Advisory Board). The group holds a monthly telephone conference that is attended by a representative group of enthusiastic CF patients and providers from the Adult CF Program –Drs. Knauft and Pope, Dee Rendock, Allison Moreau, Amy Mueller and Tessa Mah.
The overarching purpose of this Board is to improve the quality of care through partnership of staff and the adult patient community. Ideas for projects typically originate with the adult patient members of the Board.
Here are a few of the accomplishments of the Board to date:
• Production of an inpatient brochure
• Improving patient/office communication
• The launch of 'Lung Fu,' a social networking site (like Facebook) for
adult CF patients
Future work will include improving collaboration between patients and providers in setting goals for treatment, ongoing development of Lung Fu, and the creation of an interactive CF education blog.
Participation in the Adult Advisory Board is a great way to shape your experience as a patient and to have a direct impact on improving the CF Program. It’s also an opportunity to connect with other members of the adult CF community and to interact with the CF Program staff outside of a clinic setting. We welcome additional members to the AAB, so if you are interested or just want to know more about us please e-mail Amy Mueller