| The Cystic Fibrosis Foundation Works to Enhance the Quality and Safety of Care |
The Cystic Fibrosis Foundation is the leading US organization devoted to curing and controlling cystic fibrosis (CF), a fatal genetic disease affecting about 30,000 people nationwide. Established by parents in 1955, the Foundation, headquartered in Bethesda, MD, supports a network of approximately 115 Foundation-accredited CF care centers, providing vital treatments and CF resources to patients and families. As a result of dramatic improvements in research and care, the median age of survivors is nearly 37 years old; today 43 percent of people with CF are age 18 or older. In December 2006, the Foundation released outcome data from its network of care centers to educate patients, families, and clinicians and inspire them to work together for the best outcomes. This reporting, along with other efforts to engage patients and families as full partners, is central to the comprehensive quality improvement program launched by the Foundation in 2002. The initiative includes training care center staff, providing tools to identify and implement best practices, and building stronger partnerships among patients and families and care center clinicians. The Foundation is currently collaborating with the Institute for Family-Centered Care by inviting patients and families to serve as members of improvement teams, act as center advisors, form peer-support groups, and share information via listservs, emails, and newsletters. Read more... |
| Patient Advocate and Leader of the Month: Joan Finnegan Brooks |
Joan Finnegan Brooks' luck began early in life. In 1960, Joan was diagnosed with cystic fibrosis (CF) at the age of one month. She was adopted by two wonderful parents, who despite losing their 2 1/2 year old daughter to CF, and having a son with CF, opened their hearts to Joan. As a 46-year-old adult with cystic fibrosis, Joan is beating the odds and living life to the fullest. Joan's involvement with the Cystic Fibrosis Foundation began as a child, as a result of her parents' volunteering from the earliest days of the Foundation. The mission of the Foundation "is to assure the development of the means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease." (For more information, see www.cff.org.) Joan, past President of the Massachusetts/Rhode Island CF Chapter, has been an active volunteer for the CF Foundation at both the local and national levels, and is an advocate for all people and families affected by cystic fibrosis. In 2004 and 2005, Joan presented Keys to Successful Living with CF at the Foundation's North American Medical Conference, an international medical conference for clinicians and researchers. Her presentation focused on practical life skills clinicians need to teach young patients with CF to become responsible adults who can manage their own treatment while achieving their goals and dreams. In 2006, Joan participated in a Foundation Web cast, Building Life Skills to Manage CF (available in Web cast archives at www.cff.org) and co-chaired CF Education Day in New York City. Read More ... |
| Call for Patient- and Family-Centered Care Images, Mission, Vision, and Philosophy of Care Statements |
We need your help. Two Institute publications, Design Planning for Newborn Intensive Care and Developing Family-Centered Vision, Mission, and Philosophy of Care Statements, are being updated. The Institute is interested in seeing, and possibly including, (1) images of patient- and family-centered newborn intensive care units and (2) written mission, vision, and philosophy of care statements from hospitals and ambulatory settings that provide adult healthcare. The Institute would like to showcase:
(1) images of newborn intensive care units that present:
- Welcoming, positive first impressions.
- Privacy and supportive bedside environments for the infant and the family.
- Gathering places for families that: support networking and mutual support; enhance access to useful information; meet practical needs such as bathing, eating, laundry, professional work, and other activities; offer play and diversion for brothers and sisters; and allow for quiet reflection and spiritual support.
- Staff work and support space.
(2) written mission, vision, and philosophy of care statements from hospitals and ambulatory settings that provide adult healthcare. Please send digital versions to jprimrose@iffcc.org or hard copy to Institute for Family-Centered Care, 7900 Wisconsin Avenue, Suite 405 Bethesda, MD 20814, and include contact information. Submission of material indicates permission for the Institute to use the material in Institute publications or on the Institute Web site. Your assistance in this project will support efforts to advance patient- and family-centered care. For other ways to help, please visit our Donate page. |
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| Register now for Hospitals Moving Forward with Patient- and Family-Centered Care Seminar |
Register Now Less than 24 hours after the Hospitals Moving Forward with Patient- and Family-Centered Care seminar ended, the calls, questions, and emails about the Portland, Maine Seminar began! Well, we're ready with the answers now! The upcoming Hospitals Moving Forward with Patient- and Family-Centered Care seminar takes place in Portland, Maine, April 23-26, 2007. The Seminar is co-sponsored by the national Cystic Fibrosis Foundation (see accompanying article), Maine Medical Center, Maine General Health, and Eastern Maine Medical Center. Sessions will emphasize enhancing quality and safety for patients and their families. The seminar provides three and a half days of comprehensive, intense, and practical information designed to help hospital administrators, physicians, nurses, patients, and their families become effective change agents in their institutions and health systems. Attendees have the opportunity to explore examples of excellence and innovation in patient- and family-centered policy, programs, practice, professional education, and facility design in hospitals across the United States. Attendees represent a broad range of health care disciplines and fields of interest and include health care professionals as well as patient and family leaders. This variety is particularly encouraging, because only through collaboration among patients, families, health care providers, and administrators will patient- and family-centered care become a reality. Seminar attendees will learn strategies to transform hospital systems to address the challenges and recommendations discussed in the Institute of Medicine's report, Crossing the Quality Chasm: A New Health System for the 21st Century. |
| 2007 GoodSearch Campaign is Launched |
February Search Goal is 350 searches. One search from everyone that receives this newsletter will far exceed that goal. Help us meet the Institute's GoodSearch goal of the month. Every time you search the Internet at http://www.goodsearch.com/,
Yahoo will donate one penny to the Institute for Family-Centered Care. Simply indicate the Institute for Family-Centered Care as your favorite organization and continue to search the Internet. GoodSearch will give you the same high-quality search results you're accustomed to and help the Institute fund its patient- and family-centered care initiatives. To give it a try, click on the above link. |
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