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AAPD - American Assoication of People with Disabilities
AARP - Policy and Research
AcademyHealth
Administration on Aging
Agency for Healthcare Research and Quality
Alabama Department of Public Health
Alaska Division of Public Health
American Cancer Society
American College of Healthcare Executives
American Journal of Psychiatry
American Journal of Psychiatry Online
American Journal of Respiratory and Critical Care Medicine
American Psychiatric Publishing Inc.
Annie E. Casey Foundation
Arizona Division of Public Health Services
Arkansas Divisiion of Health
BMJ Journals Online
Boise State University - Center for the Study of Aging
California Center for Health Statistics
California Department of Health Services
California HealthCare Foundation
California Hospice and Palliative Care Organization
California Office of Statewide Health Planning and Development
CAMC Health Education and Research Institute-The Center for Health Services and Outcomes Research
Cecil G Sheps Center, University of NC at Chapel Hill
Center for Advanced Illness Coordinated Care
Center for Gerontology and Health Care Research at the Brown Medical School
Center for Health Informaiton, Research, Statistics and Evaluation
Center to Advance Palliative Care
Centers for Disease Control & Prevention
Centers for Medicare & Medicaid Services - Office of the Actuary
Clinical Journal of the American Society of Nephrology
CMS -Office of Research, Development and Information
Colorado Department of Public Health and Environment
Commerical Site - Find Articles
Connecticut Department of Public Health
Dartmouth Medical School - Center for Evaluative Clinical Sciences
Delaware Department of Health and Social Services
Department of Disability, Aging, and Longterm Care
Dept of Elder Affairs - State of Florida
Dibbern & Dibbern
District of Columbia Department of Health
Duke Institute on Care at the End of Life
EurekAlert!
FedStats
Florida Agency for Health Care Administration
Florida Department of Health
Florida International University - The Center on Aging
Florida Office of Program Policy Analysis and Government Accountability
Florida Policy Exchange Center on Aging
Foundation for Healthy Communities (New Hampshire)
Georgia Division of Public Health
Hawaii Department of Health
Health Council of South Florida
HealthCareHiring.com
HMEP Final Report
Hospice Council of West Virginia
Hospice Foundation of America
Idaho Department of Health and Welfare
Illinois Department of Public Health
Indiana State Department of Health
Inter-University Consortium for Political and Social Research
Iowa Division of Environmental Health
Journal of Pain and Symptom Management
Kaiser Family Foundation
Kansas Department of Health and Environment
Kentucky Department of Public Health
Louisiana Department of Health and Hospitals
Maine Bureau of Health
Maryland Department of Health and Mental Hygiene
Maryland Healthcare Commission
Maryland Office of the Attorney General
Maryland State Advisory Council on Pain Management
Maryland State Data Center
Massachusetts Commission on End of Life Care
Medicare Payment Advisory Committee
Miami University - SCRIPPS Gerontology Center
Michigan Department of Community Health
Milliman USA, Inc.
Minnesota Board of Aging
Minnesota Department of Administration
Minnesota Department of Health
Minnesota Partnership to Improve End of Life Care
Mississippi Department of Health
Missouri Department of Health and Senior Services
Missouri Hospice Association
Montana Department of Public Health and Human Services
National Alliance for Caregiving
National Association for Home Care and Hospice
National Cancer Institute
National Center for Health Statistics
National Hospice and Palliative Care Organization
National Hospice Work Group
National Institute on Agining
NC Bar Association
NC Central Cancer Registry
NC Cooperative Extension Service
NC DHHS - Bureau of Senior Services
NC DHHS - Center for Health Informatics and Statistics
NC DHHS - Division of Aging & Adult Services
NC DHHS - Division of Health Service Regulation
NC DHHS - Division of Medical Assistance
NC DHHS - Division of Public Health
NC DHHS - Division of Public Health/Epidemiology Section
NC DHHS - Office of Minority Health
NC DHHS - State Center for Health Statistics
NC DHHS - State Center for Health Statistics/Geographic Analysis Unit
NC Office of State Budget & Mgmt - State Data Center
NC Office of State Budget & Mgmt - State Data Center/Demographics
NC Office of State Budget & Mgmt - State Data Center/Linc
NC Program for Women's Health Research
NC State University
Nebraska Health and Human Services
Nebraska Hospice and Palliative Care Partnership
Nevada Bureau of Health Planning and Statistics
New Hampshire Department of Health and Human Services
New Hampshire Partnership for End of Life Care
New Jersey Department of Health
New Mexico Department of Health
New York City Department of Health and Mental Hygiene
New York Department of Health
New York Office of the Attorney General
New York State Office of the Aging
North Dakota Department of Health
Office of Inspector General
Office of NYS Attorney General
Office of Ohio Health Plans
Ohio Department of Health
Ohio Dept of Job and Family Services
Ohio Hospice and Palliative Care Organization
Oklahoma State Department of Helath
Oregon Department of Human Services
Oregon Health and Sciences University: Center for Ethics in Health Care
Oregon Hospice Association
Pain & Policy Studies Group University of Wisconsin Comprehensive Cancer Center
Pennsylvania Department of Health
PopCRN: The Population-based Palliative Care Research Network
Rand Corporation
Reclaiming the End of Life: A New Hampshire Project
Rhode Island Department of Health
RIPA / Blue Cross End-Of-Life / Palliative Care Professional Advisory Committee
Robert Wood Johnson Foundation
Rochester Health Commission
Rosalynn Carter Institute for Caregiving
Sage Publications
SC Agency on Aging
SC Budget & Control Board, Office of Research & Statistics
SC Dept of Insurance
SC DHEC
SC Kids Count
Science Direct
Science Direct
South Dakota Department of Health
Supportive Care of the Dying
Sylvester Comprehensive Cancer Center
Tennessee Department of Health
Texas Department of Health Services
The Carolinas Center for Hospice and End of Life Care
The Center for Health Services and Outcomes Research
The Health Policy Institute of Ohio
The Hospice Institute of the Florida Suncoast
The Lifetime Healthcare Companies
The Statewide Planning and Research Cooperative System (SPARCS)
U.S. Department of Health and Human Services
United Hospital Fund
University of Florida
University of Medicine & Dentistry of New Jersey
University of Michigan
University of Rochester Medical Center
University of South Dakota Sanford School of Medicine
University of South Florida
University of Southern Florida - The Center for Hospice, Palliative Care and End-of-Life Studies
University of Wisconsin Cooperative Extension Program
Urban Institute
Utah Office of Vital Records and Statistics
Vermont Department of Health
Virginia Office of Health Statistics
Washington Center for Health Statistics
West Virginia Bureau for Public Health
West Virginia Caregivers
West Virginia Health Statistics Center
West Virginia Office of Health Facility Licensure and Certification
West Virginia State Medical Association
West Virginia University Center on Aging
West Viriginia Center for End-of-Life Care
Wisconsin Cancer Council
Wisconsin Department of Health and Family Services
Wisconsin Division of Public Health - WCRS
Wyoming Dept. of Health
Any
1983 Medicare demostration
1993–2003, National Long Term Care Survey
1993–2003, National Long Term Care Survey
1999/2000 Ryan, McGinn Survey
2000 BRFSS
2003 State Survey of Older Floridians
2005 North Carolina BRFSS Caregiver project
2006 North Carolina BRFSS
2007 Natioanl Home and Hospice Care Survey
AARP
AARP - Massachusetts End of Life Survey
AARP - NC Caregiving in the Workplace Survey
AARP - NC End of Life Care Survey
AARP Public Policy Institute
AcademyHealth 2005 Annual Research Meeting
Agency for Healthcare Research and Quality
Alabama Center for Health Statistics
Alaska Bureau of Vital Statistics
American Bar Association
American Board of Hospice and Palliative Medicine
American Hospital Association
American Hospital Association Annual Survey
American Journal of Psychiatry
American Journal of Psychiatry Online
American Medical Association
Annual Survey of Hospices
Arizona Division of Public Health Services
Arkansas Division of Health
Bereavement survey conducted by LifePath Hospice, Hernando Pasco Hospice and Hospice of SW Florida
BMJ Journals Online
Boise State Center for the Study of Aging
California Cancer Registry
California HealthCare Foundation
California Office of Statewide Health Planning and Development
California Vital Statistics
CAMC Health Education and Research Institute-The Center for Health Services and Outcomes Research
Center for Advanced Illness Coordinated Care
Center for Gerontology and Health Care Research at the Brown Medical School
Centers for Disease Control & Prevention
Centers for Medicare and Medicaid Services
Centers for Medicare and Medicaid Services - Office of Information Services
Centers for Medicare and Medicaid Services - Office of the Actuary
CIRTS Data Tables
CMS - Claims data (1993-2000)
CMS CR5685, June 29, 2007
COALA Caregiver Self-Assessment Survey
Colorado Department of Public Health and Environment
Connecticut Department of Public Health
Dartmouth Atlas project
Delaware Division of Public Health
Department of Health and Human Services
Department of Social and Behavioral Sciences at the University of California, San Francisco
District of Columbia Center for Health Statistics
Division of Research and Epidemiology
Division of Trauma/Critical Care
Duke Institute on Care at the End of Life
Employee Health Care Decisions Survey
Established Populations for Epidemiologic Studies of the Elderly (EPESE)
EurekAlert!
FACCT (Foundation for Accountability)
Facts on Dying, Brown Medical School, Center for Gerontology
Family Caregiver Alliance’s National Center on Caregiving
FEHC - Family Evaluation of Hospic Care Survey
Florida Agency for Health Care Administration
Florida Cancer Data System
Florida Department of Elder Affairs
Florida Department of Health
Florida Need Projections for Hospice Programs
Florida Policy Exchange Center on Aging
Georgia Office of Health Information and Policy
Hawaii Department of Health
HCFA - Minimum Data Set
Health Care Financing Administration Standard Analytic File of Medicare 5% sample hospice clain data
HealthCareHiring.com
Hospice Council of West Virginia
Hospice Medicaid Education Project
Hospice Network of Maryland
Hospital License Renewal Applications
Idaho Department of Health and Welfare
Idaho Statewide End of Life Survey Report
Illinois Department of Public Health
Indiana State Department of Health
InterStudy Publications
Iowa Bureau of Health Statistics
Joint Annual Report of Hospitals
Kaiser Commission on Medicaid and Uninsured
Kaiser Family Foundation State Health Facts
Kansas Information for Communities
Kentucky Department of Public Health
Last Acts
Licensed Health Manpower Data System
Life Circle South Dakota: Partners Improving End of life Care
Louisiana Center for Health Statistics
Maine Office of Health Data and Program Management
Maryland Department of Health and Mental Hygiene
Maryland Health Care Commission
Maryland Office of the Attorney General
Maryland State Advisory Council on Pain Management
Massachusetts AARP
Massachusetts Commission on End of Life Care
Medicaid Claims System
Medicaid State Plans
Medicaid State Plans and plan amendments approved by DHHS’ CMS
Medicare claims
Medicare Current Beneficiary Survey
Medicare Payment Advisory Committee
MEPS Chartbook 2, Racial and Ethnic Differences in Health, 1996
Mercy Health Partners Palliative Care Demonstration Project
Miami University - SCRIPPS Gerontology Center
Michigan Department of Community Health
Milliman Study of Medicare Certified Hospices Organizations
Minnesota Board of Aging State Survey
Minnesota Center for Health Statistics
Minnesota Department of Health
Mississippi Department of Health: Public Health Statistics
Missouri Department of Health and Senior Services
Missouri Hospice Association
Montana Department of Health and Human Services
NAC /AARP report
National Center for Health Statistics
National database from medicare.gov
National Death Index
National Family Caregiver's Association
National Home & Hospice Care Surveys
National Hospice and Palliative Care Organization
National Hospice Outcomes Project
National Hospice Social Work Survey
National Hospice Work Group
National Institute on Aging
National Palliative Care Research Center
NC AHEC Program
NC Annual Data Supplement to Licensure Application
NC Bar Association
NC Behavioral Risk Factor Surveillance Survey (BRFSS)
NC Board of Nursing
NC Board of Pharmacy
NC Central Cancer Registry
NC Cooperative Extension Service -NSU
NC Death Certificates
NC DHHS - Division of Aging and Adult Services
NC DHHS - Division of Health Service Regulation
NC DHHS - Division of Health Service Regulation
NC DHHS - Division of Medical Assistance
NC DHHS - Division of Public Health
NC DHHS - Office of Minority Health
NC Health Statistics Pocket Guide – Center for Health Informatics and Statistics
NC Medical Board
NC State Center for Health Statistics
NC State Data Center
NC State Demographers Office
Nebraska Health and Human Services
Nebraska Hospice and Palliative Care Partnership
Nevada Center for Health Data and Research
New Hampshire Department of Health and Human Services
New Hampshire Hospice Providers
New Hampshire Partnership for End-of-Life Care
New Jersey Center for Health Statistics
New Mexico Department of Health
New York City Community Health Survey (CHS)
New York City Department of Health and Mental Hygiene
New York City Offices of Vital Records and Vital Statistics
New York Department of Health
New York Office of the Attorney General
New York Public Health Law
New York State Cancer Registry
New York State Office of the Aging
NHPCO member surveys
NHPCO National Data Set
NIA's Collaborative Studies of Long-Term Care
North Dakota Division of Vital Records
Office of Inspector General
Ohio Death Certificates
Ohio Department of Aging
Ohio Department of Health
Ohio Dept of Job and Family Services
Ohio Dept of Job and Family Svcs - Bureau of Health Plan Policy
Ohio Family Health Survey
Ohio State Bar Association
Oklahoma State Department of Health
OPPAGA analysis of state hospice regulations
OPPAGA hospice survey
Oregan Health and Sciences University: Center for Ethics in Health Care
Oregon Center for Health Statistics
Oregon Hospice Association
Pain & Policy Studies Group of the University of Wisconsin
PASSPORT data for State Fiscal Year (SFY) 2003
Pennsylvania Department of Health Bureau of Health Statistics and Research
Pilot Study of Patients in Mayo Hospice Program
PopCRN: The Population-based Palliative Care Research Network
Program of All-Inclusive Care for the Elderly
Quantitative telephone interviews with 1,480 family caregivers
Rand Corporation
Reclaiming the End of Life: A New Hampshire Project
Research Team for the Dartmouth Atlas
Rhode Island Department of Health
Robert Wood Johnson Foundation
Rochester Health Care Forum
Sage Publications
SC Dept of Health and Environmental Control
SC Dept of Insurance
SC DHEC, Division of Biostatistics and Health GIS
SC DHEC, Division of Biostatistics, Office of Research & Statistics
SC DHHS, Services Bureau of Senior Services
SC Medicaid Client Summary Report (DHHS)
SC Medical Association
SC State Board of Medical Examiners
SC State Board of Nursing
SC State Board of Physical Therapy
SC State Budget & Control Board, Office of Research & Statistics
SC State Budget & Control Board, Office of Research and Statistics - Health and Demographics Section
SC State Survey
South Dakota Department of Health
State Regulations, Laws and Policies
Statewide Planning and Research Cooperative System (SPARCS)
Survey by Veterans Administration Medical Center, White River Junction, Vermont
Survey of New York City caregivers
Telephone Survey by RMS Strategies
Tennessee Department of Health
Texas Center for Health Statistics
The Caregiving at Life’s End National Needs Assessment
The Carolinas Center for Hospice and End of Life Care
The Hospice Institute of the Florida Suncoast
UNC-CH Office of the Provost (Health Affairs)
United Hospital Fund
United Hospital Fund Palliiative Care Initiative
United Hospital Fund's Community-Oriented Palliative Care Initiative
Universal Data Set (UDS)
University of Medicine & Dentistry of New Jersey
University of Rochester Medical Center
University of South Dakota Neurosciences School of Medicine
University of Southern Florida - The Center for Hospice, Palliative Care and End-of-Life Studies
University of Wisconsin Cooperative Extension Program
Urban Institute and Kaiser Commission on Medicaid and the Uninsured
US Census Bureau Data
US Department of Urban Development, Economic & Market Analysis Divisions
US DHHS - CMS, Federal Register
US DHHS, Disability, Aging, and Longterm Care
US DHHS, Health Care Financing Administration
USF - Florida Policy Exchange Center on Aging
Utah Office of Vital Records and Statistics
Various Journal Articles from JAMA; Pediatrics; J Clin Oncol
Various state agencies
Various state and national agencies
Vermont Department of Health
Veterans Affairs Ann Arbor Healthcare System
Virginia Office of Health Statistics
Washington Center for Health Statistics
West Virginia Behavioral Risk Factor Survey
West Virginia Bureau for Public Health
West Virginia Bureau of Employment Programs
West Virginia Cancer Registry
West Virginia Center for End-of-Life Care
West Virginia Health Statistics Center
West Virginia Office of Health Facility Licensure and Certification
Wisconsin Department of Health and Family Services
Wisconsin Division of Public Health - WCRS
Wisconsin's Comprehensive Cancer Control Program
WVHCA - Annual Survey
WVU Center for Health, Ethics, and Law
WVU Center on Aging - Six Demonstration Projects For Rural Older Adults
Wyoming Cancer Surveillance Program
Wyoming Dept of Health - Vital Records
Data Type
[i.e., Can you manipulate/customize the data?]
Data Display
[i.e., How is the data presented visually?]
Any
, or narrow below:
Static (non-customizable) Data
Customized Data via Querying/Searching
Raw/Downloadable Data for offline use
Any
, or narrow below:
Narrative
Pie Graph
Table
Map
Line Graph
Other
Bar Graph
Sub-categories / Topics / Sub-topics
Any
, or narrow below: [
Expand All
/ Collapse All
]
Decedent Characteristics
Demographics/Social Factors
Age
Gender
Marital Status
Race/ethnic group
Education
Income
Occupation
Faith preference/religion
Where lived and with whom
Other
Health Status/ Cause of Death
SF36 in last year
Functional level in last year
Physical symptoms in last year
Psychosocial symptoms in last year
Cognitive level in last year
Diagnoses in last year
Cause of death
Other
Health Beliefs/ Cultural Factors
Cultural factors
Death practices (e.g. burial or cremation)
Trust in providers
Awareness of prognosis
Other
Individual involvement in healthcare
Use of advance directives/ surrogates/ HC proxies
Documented preferences for EOL care
Have primary care physician
Historical use of care/ patterns of use
Other
Indicators of social support needs
Use of social support services
Perceived need
Other
Patient/Family/Significant Other
Caregivers
Caregiver Availability
Caregiver Health, Social and Emotional Issues
Caregiver Relationship to deceased
Caregiver Age; other demographics
Other
Caregivers and decision-making
Utilization/Use of Healthcare and Community Services
End-of-Life Care (Last year of life)
Location of death
Length of time at final setting
Use of opioids
Use of hospice or other palliative care
Spiritual Care
Use of ICU
Use of hospitalizations
Other locations of care
Transfers in last month
Treatments (e.g. Surgery, Chemotherapy, Feeding Tubes)
Use of social support services (Community agencies)
Other
Physician Services
Grief and Bereavement Care
Use of bereavement services
Other
Experience/Quality/Outcomes of Care
Evaluated Outcomes and Quality of Care
Pain and symptom management
Quality of life
Quality of dying and death
Bereavement outcomes
Other
Perceived Quality of Care/Outcomes; Patient/Family Satisfaction
Unmet needs
Symptom management
Communication
Coordination and continuity of care
Care consistent with preferences
Emotional and spiritual support
Community support
Overall perception of care
Self-determined life closure
Other
Costs of Care
Medicare costs in last year of life
Hospice costs in last year of life
Out-of-pocket expenses
Other
Healthcare Environment and Community Characteristics
Healthcare Services Available
Level of competition
HMO enrollment/ penetration of managed care
Relative price of care (All and EOL)
Ratio of all HC personnel and facilities to total population and to decedents
Hospitals (number, size, profit status, palliative care services)
ICU beds
# of hospice programs
Hospice penetration
# Home health providers
# Nursing homes
# Nursing homes with hospice contracts
Residential/board and care
Community agencies
Individual providers by specialty
# providers certified in palliative care
Other
Pediatric Palliative Care
Healthcare Policy and Laws
Medicaid benefit for hospice, nursing home, palliative care, pediatric end-of-life care
Advance directives laws
Surrogacy laws
Pain management laws
Narcotic prescribing laws
Other
General Community Characteristics
Median income, racial mix, age distribution
Percentage of population below poverty level
Children in poverty
Index of “rurality”
Faith communities
Other
Community Support for EOL Care
Community Resources for EOL Care
Faith community support
Spiritual care providers
Social support services
Grief and bereavement services
Referral Network
Medical transportation services
Information availability on Aging Network and EOL care
Other
Healthcare Financing
Health insurance coverage (including HMO)
Other
Prescription Benefit Coverage (Insurance)
Is registration required on host site?
Any
Yes
No
Maybe; see site for more information
Is payment required on host site?
Any
Yes
No
Maybe; see site for more information
Is special software required on host site?
Any
Yes
No
Geographic Areas Covered
Any
, or narrow below:
U.S.A. National Data (not state-by-state)
County-level data is available (availability may vary by state)
Other geographic levels are available
All States (state-by-state), or narrow to specific states.
Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
District of Columbia
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming
Span of Years Covered
Any
Generally includes 1-2 years
Generally includes 3 or more years
When are Data Updated?
Any
Data describe one point in time
Data are updated regularly
