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How different audiences/organizations might use the EDELE site
Healthcare providers and community service agencies can use EDELE to find death statistics and other
data about the population that needs end-of-life care and about gaps in services. This information
can be useful for improving care delivery and developing new service lines.
Advocacy organizations can use EDELE to better understand where people die and how they experience
care in the community, in order to better target needed end-of-life care reform. This information
is useful in crafting improvement efforts and garnering support from the community and from funders.
Health services researchers can use EDELE to find out what is known about end-of-life care services,
delivery models and outcomes and to identify needed areas for further research. They can also find
background information for grant writing.
Policy makers can use EDELE to examine patterns of use of end-of-life care services, and the
population being served. These data will help identify critical areas for legislative and
regulatory reform.
Purpose and types of information on EDELE
EDELE responds to the Institute of Medicine report Describing Death in America that highlights the
need for better access to data about end-of-life care. Gaps in end-of-life care and bad experiences
of dying are increasingly recognized as a public health issue and an important step in addressing the
issue is better data. (Rao JK, Anderson LA, Smith SM. End of life is a public health issue. American
Journal of Preventive Medicine 2002;23(3):215-20.)
The EDELE website serves as an access point to publicly available data on the Internet about
end-of-life care, including:
- demographic, clinical and social information about people who died and their families;
- utilization of healthcare and community services by decedents and caregivers;
- reports of outcomes and experience of end-of-life; and
- the availability of healthcare and community services for patients at the end of life and their families.
These sites are organized according to the EDELE framework of end-of-life information.
EDELE offers active links to other web pages where data about end-of-life care is found. These pages
provide various levels and types of data including narrative reports (that include data tables),
user-ready charts or tables, static tables of data, searchable datasets that allow custom reporting,
larger tables of data that may require some analysis or manipulation by the user, and raw datasets to
be downloaded for analysis. Each link is annotated so that users know what they will find at each
linked web page.
While there is some information on every state in the US, and some national level data, the first
iteration of EDELE (2005-2006) focuses on data for North and South Carolina.
Search strategies
Search for desired information in any of four ways:
| By topic |
Drill down into the EDELE framework categories and topics and choose one or more subtopics. |
Annotated links to web pages and websites offering data on the chosen topics in any state currently included in EDELE’s database. |
| By state |
View the map of the United States. The color of each state corresponds to the number of topics for which data is currently available on EDELE. |
Annotated links to sites offering data for the state(s) chosen. Data may cover any topic in the framework. |
| By keyword |
Choose one of our keywords, or enter your own. The search engine finds matches to the keyword in our database of websites and descriptions. (Note that the engine does not search other websites.) |
You will see a list of annotated links to sites for which this keyword appears in the URL, the name of the site, the presenter, or any of our annotation phrases. |
| By frequently asked question |
Select the question and sub-question that best match what you want to know. |
You will see a list of annotated links to websites where answers will be found. |
| Advanced search |
Use our form to select multiple topics, states, and or data types. |
A list of annotated links to sites offering data that match your search criteria. |
Users can choose several ways to view the resulting list of web pages. The list can include any or all
of the following for each web page: URL, basic description, screen shot, more detailed information,
and/or information on the “parent” website housing that web page.
Annotation information for the web pages in the EDELE database
For each web page in the EDELE database, the following information is recorded. Users have some control over what will be displayed in the annotation provided in the results list.
- The URL – a hotlink directly to the site
- A screenshot of the home page
- The name of the site
- The organization that maintains the site
- The sources of data on the site
- The type of data and file format
- For narrative reports, the pages where the data are found
- States for which data are available
- Whether registration, payment or downloadable software is needed to view the data on the site
- How frequently data are reported and updated
See an example of a listing.
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