End of Life Care : EdeleData.org: A New Site Coordinating Demographics on Death and Dying
Posted by Chapster on Nov-15-2005 (3370 reads)

Due to the woeful lack of information about the demographics of the dying process, the Carolinas Center for Hospice and End of Life Care, the National Hospice and Palliative Care Organization, and the U S Administration on Aging have opened a new website, EdeleData.org. we already love the site and feel certain that it will improve the understanding of the way dying occurs in the United States. To see the press release, continue reading.

ALEXANDRIA, Va., and CARY, N.C., Nov. 15 -- 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 http://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 Web site 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 Web 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 Web site (http://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.
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
haven't 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, NHPCO's consumer engagement initiative. Visit
http://www.caringinfo.org or call the HelpLine at 1-800-658-8898.

CONTACT: Melanie P. Merriman, PhD, +1-305-762-7966,
, for the EDELE Project; or Jon Radulovic, VP
Communications of National Hospice and Palliative Care Organization,
+1-703-837-3139, jradulovic@nhpco.org

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