Data Sources: Professional
Organizations and Associations
Hospital Association (AHA), Information Technology Supplement
American Hospital Association (AHA).
The AHA conducts
an annual survey of all hospitals in the United States, including both
registered and nonregistered hospitals. The focus is on four main areas, which
include organization, facilities, community benefit, and utilization. In 2008,
the AHA administered a supplemental information technology (IT) mail survey to
gather information on the extent to which hospitals have fully functional
health information systems, the characteristics of these systems, and the
functions available and used by hospital staff.
hospitals make up 98 percent of the surveyed hospitals, which means that
hospital meets the AHA criteria for registration as a hospital facility. In
2008, there were 951,045 registered hospitals involved in the surveys. State
and local associations, Medicare and Medicaid centers, national organizations, and
government bodies help identify nonregistered hospitals, which helps to yield a
high response rate. If data are missing, estimates are generated from the
previous year's responses and from comparisons to hospitals of similar size and
orientation. The reporting period is on a fiscal year basis.
The AHA hospital survey reports current and
historic data on utilization, personnel, revenue, expenses, managed care
contracts, community health indicators, physician models, technology,
electronic record systems, number of beds and admissions, and urban/rural
status. The 2008 IT supplement queried hospital representatives about the
adoption of electronic medical records and the scope of computer functions used
by the facility.
All hospitals in the United States.
Combined with the core survey, information
collected includes identifying information about the hospitals, organizational
structure, facilities and services, utilization data, community orientation
indicators, physician arrangements, managed care relationships, expenses,
staffing, use of electronic medical records, and use of electronic systems for
prescribing and sharing patient information across providers.
Family Evaluation of Hospice Care (FEHC) Survey
National Hospice and Palliative Care Organization (NHPCO).
The FEHC survey is administered by participating hospices to
family members of deceased hospice patients. The surveys are usually completed
by paper and pencil and returned to the hospice program or a data vendor hired
by the hospice to mail the surveys and compile results. A published version for telephone administration with an associated
script is also available. Individual hospices electronically submit data
to NHPCO via a Web-based submission system and vendors submit client data files
on a quarterly schedule. NHPCO maintains a multiyear FEHC data repository.
Survey Sample Design
The FEHC is a postdeath survey that asks questions about families'
perception of the care provided to the patient, as well as their own hospice
Participation in the FEHC is entirely voluntary, although
NHPCO encourages all hospices nationwide to take part.
Hospices are asked
to contact bereaved family members anywhere from 1 to 3 months after the
patient's death to invite them to participate in the survey. The national
average response rate during quarter 2 of 2009 was 38 percent.
Primary Survey Content
Among information gathered are caregivers' perceptions of
the hospice's performance and patient's experience in the following areas: patient
comfort and emotional support, coordination of care, decisionmaking,
information sharing, respect for the patient, and emotional support to the
Age, gender, race/ethnicity, and educational level of decedents and
Organization home page: http://www.nhpco.org.
Connor SR, Teno J, Spence C, et al. Family Evaluation of Hospice Care:
results from voluntary submission of data via website. J Pain Symptom Manage
National Cancer Data Base (NCDB)
Operation of the NCDB is jointly supported by the Commission on Cancer (CoC)
of the American College of Surgeons and the American Cancer Society (ACS).
The NCDB is a nationwide facility-based oncology database that annually
captures 70 percent of all newly diagnosed cancer cases in the United States.
The NCDB holds information on more than 26 million cases of reported cancer
diagnoses since 1985 and continues to grow.
All CoC-accredited hospital cancer programs are annually required to
submit data for all patients diagnosed or treated for a cancer diagnosis. More
than 1,500 participating hospitals respond to a call for data, submitting case
reports for a specified calendar year approximately 9 months after the calendar
CoC-accredited cancer program registries collect and submit data
elements to the NCDB using nationally standardized data item and coding
definitions. These are found in CoC's Facility Oncology Registry Data
Standards (FORDS) and the North American Association of Central Cancer
Registries' nationally standardized data transmission format specifications.
Primary Survey Content
The NCDB contains standardized data elements on patient demographics,
patient insurance status, tumor site, stage and morphology, comorbidities,
first course of treatment, disease recurrence, and survival information. In
addition, the NCDB contains information on patient ZIP Code and county of
residence, which is used to incorporate area-based sociodemographic
characteristics. Selected characteristics of the reporting health care facility
are also collected.
Cancer patients in the United States.
Gender, age at cancer diagnosis, and race/ethnicity.
Continuously since 1985.
National; nine U.S. Census Bureau regions; metropolitan and nonmetropolitan
NCDB home page: http://www.facs.org/cancer/ncdb/.
Bilimoria KY, Stewart AK, Winchester DP, et al. The National Cancer Data
Base: a powerful initiative to improve cancer care in America. Ann Surg Oncol
2008 Mar;15(3):683-90. Epub 2008 Jan 9.
Stewart AK, Bland KI, McGinnis LS, et al. Clinical highlights from the
National Cancer Data Base. CA Cancer J Clin 2000;50:171-83.
Sylvester J, Blankenship C, Carter A, et al. Quality control: the
American College of Surgeons Commission on Cancer Standards, National Cancer
Data Base, and Cancer Liaison Program. J Reg Mgmt 2000;27:68-74.
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