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EDELE is a project of The Carolinas Center for Hospice and End of Life Care (The Carolinas Center)
and The National Hospice and Palliative Care Organization (NHPCO). Both are not-for-profit leadership
and advocacy organizations representing hospices and palliative care providers. For additional
information on the participating organizations go to
www.carolinasendoflifecare.org and
www.nhpco.org.
Initial funding for the project was provided by a by a grant from the U.S. Administration on Aging to The Carolinas Center
(http://www.aoa.gov). We are grateful to our sponsors for ongoing financial support of the EDELE website.
The EDELE project is directed by an Advisory Board of experts in
end-of-life care delivery, research, ethics, and evaluation. Melanie Merriman, Ph.D., MBA of
Touchstone Consulting is the project director.
The Advisory Board was charged with gathering data about end-of-life care that could help in making
improvements in care, services and the experience of patients and families. Early in the project,
the Board determined that the project would focus on providing ready access to existing data and
presenting it in a user-friendly way. In order to identify and organize available data The EDELE
Advisory Board developed a framework for sorting the data into three major categories:
- Epidemiology of Decedents: People who died and their families
- Utilization & Experience of Care: Services used, quality and outcomes
- Care System & Community Support Services available and community environment
The Board also developed a group of frequently asked questions that are answered by topics in the
framework.
Once the framework was completed, EDELE staff probed the Internet to identify web pages providing data
about one or more topics in the framework. The URL and additional information describing the data
found at the site were gathered into a database that is regularly updated.
The EDELE website will be developed in phases:
- In Phase I, launched in 2005, the EDELE site offers access to comprehensive data about North
and South Carolina, and limited data for other states and for the nation as a whole. The two primary
states serve as a model for the issues of dying and end-of-life experience nationally.
- In Phase II additional information on other states, and the nation as a whole, will be added.
- In Phases III and IV, information on databases and literature not available on the Internet will be
added.
EDELE PROJECT ADVISORY BOARD
Judy Brunger, Chair
The Carolinas Center for Hospice and End of Life Care
Cary, NC
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Myra Christopher
The Center for Practical Bioethics
Kansas City, MO
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Kathleen E. Evans
The Carolinas Center for Hospice and End of Life Care
Cary, NC
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Laura C. Hanson, MD, MPH
Division of Geriatric Medicine
University of North Carolina
Chapel Hill, NC
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Melanie P. Merriman, Ph.D., MBA
Touchstone Consulting
North Bay Village, FL
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June R. Lunney, Ph.D., RN
School of Nursing
West Virginia University
Morgantown, WV
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Susan C. Miller, Ph.D., MBA
Center for Gerontology & Health Care Research
Brown University
Providence, RI
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Sharon McDonnell B.S.N. M.D. M.P.H
Dartmouth Medical School
Hanover, NH
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Robert W. Oldendick, Ph.D.
Institute for Public Service and Policy Research
Columbia, SC
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Kaye E. Norris, Ph.D.
Kaye Norris Consulting
Missoula, MT 59803
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Carol D. Spence, RN, MS, CHPN
National Hospice and Palliative Care Organization
Alexandria, VA
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Judi Lund Person, MPH
National Hospice and Palliative Care Organization
Alexandria, VA
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Martha B. Tecca, MBA
Perforum, LLC
Lyme, NH
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Karen E. Steinhauser, Ph.D.
Veterans Administration Medical Center and
Duke Medical Centers
Durham, NC
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James Tulsky, MD
Veterans Administration Medical Center and
Duke Medical Centers
Durham, NC
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Joan Teno, MD, MPH
Center for Gerontology & Health Care Research
Brown University
Providence, RI
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Sharon Wallace Williams, Ph.D.
Division of Speech and Hearing Sciences
Department of Allied Health Sciences
University of North Carolina,
Chapel Hill NC
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Tamra N. West
The Carolinas Center for Hospice and End of Life Care
Chester, SC
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