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New Website Provides Information on End-of-Life Care
Nov. 24, 2005 - In response to a report from the
Institute of Medicine highlighting the need for more and better data
about care at the end of life, The Carolinas Center for Hospice and End
of Life Care and The National Hospice and Palliative Care Organization
have launched
www.edeledata.org, a Web site offering easy access to data about
decedents, care of the dying, and community factors affecting
end-of-life care.
Visitors to the EDELE Website can search for data
by topic, by state, by using a set of pre-written questions that reflect
common data needs, or by an advanced search that allows combinations of
criteria. The search returns a list of Web pages, a picture of each
page, and information about the data source, type and display (e.g.
table, map, graph.) Then with one click, users go straight to the page
showing the data.
The site is the centerpiece of The EDELE
(Epidemiology of Dying and End-of-Life Experience) Project and was
designed by a National Advisory Board of experts in end-of-life care
policy and practice, healthcare ethics, and health services research.
The EDELE Project was funded by grants from the
Administration on Aging and in-kind contributions from The Carolinas
Center for Hospice and End of Life Care and the National Hospice and
Palliative Care Organization. Congressman David Price (Chapel Hill, NC)
requested the Federal appropriation that supported The EDELE Project in
order to increase access to the data needed to improve care at the end
of life.
The EDELE Project is focused on making public data
readily available to program planners and decision-makers. The data
include:
● demographic, clinical and social information
about people who died and their families;
● utilization of healthcare and community services by decedents and
caregivers;
● reports of satisfaction with and experience of end-of-life; and
● the availability of healthcare and community
services for patients at the end of life and their families.
The EDELE Website (www.edeledata.org)
offers active links to over 300 Web pages where data about end-of-life
care is found. Each link is annotated so that users know what they will
find at each linked Web page.
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Dr. Laura Hanson, a physician and health services
researcher in the Division of Geriatric Medicine, University of North
Carolina, Chapel Hill, remarked, I am so very impressed ... I searched
on NC and found resources I havent used before. EDELE will become one
of my bookmarks, and I anticipate frequent personal use.
Healthcare providers, community service agencies,
advocacy organizations, health services researchers, and policy makers
can use EDELE for important end-of-life information.
While there is some information on every state in
the US, the first release of EDELE (2005-2006) focuses on data for North
and South Carolina.
In addition to the wealth of information on the
EDELE Web site, members of the public looking for general information
about care at the end of life can access Caring Connections, NHPCOs
consumer engagement initiative. Visit
www.caringinfo.org or call the HelpLine at 1-800-658-8898.
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