Data Sources—Miscellaneous and
Multiple-Source Data Sponsors
Interview Survey (CHIS)
is a collaborative project of the University of California, Los Angeles (UCLA)
Center for Health Policy Research, California Department of Public Health,
Department of Health Care Services, and Public Health Institute.
CHIS is a population-based telephone survey of
California's population conducted every
other year since 2001. To capture the rich diversity of the
California population, interviews were
conducted in five languages: English, Spanish, Chinese
(Mandarin and Cantonese dialects), Vietnamese, and Korean. Interviews in all
languages were administered using a computer-assisted telephone interviewing
The CHIS used a multistage sample design.
For the first time, the random-digit-dial (RDD) sample included telephone
numbers assigned both to landline and cellular service. For the landline RDD
sample, the State was divided into 44 geographic sampling strata, including 41
single-county strata and three multicounty strata composed of the 17 remaining
counties. Within each geographic stratum, residential telephone numbers were
selected. Within each household, one adult (age 18 and over) respondent was
randomly selected. In those households with adolescents (ages 12-17) or
children (under age 12), one adolescent and one child were randomly selected;
the adolescent was interviewed directly, and the adult most knowledgeable about
the child's health completed the child interview.
To increase the precision of estimates for
Koreans and Vietnamese, areas with relatively high concentrations of these
groups were sampled at higher rates. These geographically targeted oversamples
were supplemented by telephone numbers associated with group-specific surnames
drawn from listed telephone directories to further increase the sample size for
Koreans and Vietnamese. The CHIS 2007 sample had an initial goal of completing
40,000 statewide adult interviews with 39,000 cases from the landline sample
and 500 each of Koreans and Vietnamese from the landline RDD and list samples
surveys tens of thousands of Californians on dozens of health topics. Separate
surveys are conducted for three age groups: adults (18 years and over);
adolescents (12 to 17 years); and children (birth to 12 years).
Information is obtained on demographic
characteristics, health conditions, health behaviors, insurance coverage and health
plan enrollment, household poverty level and public program eligibility and
participation, and other topics. Additional topics of interest are included in
Sample representative of California's noninstitutionalized
population living in households.
race/ethnicity, educational level, English proficiency, and place of birth.
Every other year since
Agency home page: http://www.healthpolicy.ucla.edu/,
Data system home page: http://www.chis.ucla.edu.
Health Interview Survey. CHIS 2007 Methodology Series: Report 1—Sample
Design. Los Angeles, CA: UCLA Center for Health Policy Research; 2007.
Available at: http://www.chis.ucla.edu/methodology.html.
Family Evaluation of Hospice Care Survey (FEHCS)
National Hospice and
Palliative Care Organization (NHPCO).
The FEHCS is administered by participating
hospices and palliative care organizations 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.
version for telephone administration with an associated script is also
available. A new Web-based survey process is being implemented
that allows individual hospices to submit their data electronically and to
contribute their data for a repository.
is a postdeath
survey that asks questions about families' perception of the
to the patient, as well as their own hospice experience
Participation in the FEHCS is entirely voluntary, although NHPCO
has encouraged all hospices nationwide to take part.
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, 2009 was 38%.
survey assesses multiple areas of care delivery, including patient comfort and
emotional support, coordination of care, shared decisionmaking,
information sharing, respect for the patient, and emotional support to the
race/ethnicity, and educational level of decedents and respondents.
Agency 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 Web site. J Pain Symptom Manage 2005 Jul;30:9-17.
HIV Research Network (HIVRN)
U.S. Department of Health and Human Services: Agency for
Healthcare Research and Quality (AHRQ); Health Resources and Services
Administration (HRSA), HIV/AIDS Bureau (HAB); Substance Abuse and Mental Health
Services Administration, Center for Substance Abuse Treatment (SAMHSA/CSAT);
and Office of AIDS Research, National Institutes of Health (OAR/NIH).
The HIVRN currently includes 18 medical practices across
the United States that treat more than 14,000 patients. Each practice collects
information on clinical and demographic characteristics of their patients with
HIV infection, medications they are prescribed, frequency of each patient's
outpatient clinic visits, and number of inpatient admissions. Each practice
sends information to the data coordinating center at the Johns Hopkins School
of Medicine, which consolidates this information into a single uniform
Data from the HIVRN are not nationally representative.
Annual abstraction of medical records.
Although the data collection sites are located in every
region of the country, regional projections cannot be made from HIVRN data.
Agency home page: http://www.ahrq.gov.
HIV Research Network. Hospital and
outpatient health services utilization among HIV-infected patients in care in
1999. J Acquir Immune Defic
Hospital CAHPS (HCAHPS)
U.S. Department of Health and Human Services, Centers for
Medicare & Medicaid Services (CMS),
in partnership with the Agency for Healthcare Research and Quality (AHRQ).
Mode of Administration
The CAHPS® (Consumer Assessment of Healthcare Providers
and Systems) Hospital Survey is a national standardized survey instrument and
data collection methodology for measuring patients' perspectives on hospital
Because hospitals and survey vendors survey patients a
number of ways, HCAHPS is available in four different survey modes: mail only,
telephone only, mail with telephone followup (also
known as mixed mode), and interactive voice response (IVR).
Survey Sample Design
Participation by hospitals in HCAHPS is voluntary.
Rules of participation and minimum survey
requirements must be met.
HCAHPS is a random
sample of eligible discharges of all payer types on a monthly basis. Smaller
hospitals survey all eligible discharges. Eligible discharges are defined as live
discharged hospital patients age 18 and over at admission with an inpatient
overnight stay and a nonpsychiatric diagnosis.
Data are collected from patients throughout each month of
the 12-month reporting period. Data are then aggregated on a quarterly basis to
create a rolling 4-quarter data file for each hospital. The most recent four
quarters of data are used for public reporting.
Primary Survey Content
The HCAHPS contains 27 items: 18 essential items that
encompass fundamental aspects of the hospital experience (communication with
medical staff, responsiveness of hospital staff, cleanliness and quietness of
the hospital, pain control, communication about medicines, and discharge
information); 4 screening items; and 5 demographic items.
HCAHPS is designed as a core set of questions that
complement the hospital-specific data items that hospitals may currently
collect as part of their own patient satisfaction program
Discharged hospital patients age 18 and over.
Race, ethnicity, and education.
Beginning fall 2006.
Agency home pages: http://www.cms.hhs.gov/, http://www.ahrq.gov/.
Data system home page: http://www.hcahpsonline.org/.
Hospital Survey (HCAHPS) quality assurance guidelines.
Version 5.0 (Prepared by Health Services
Advisory Group under contract to the Centers for Medicare & Medicaid
Services. Baltimore, MD: Centers for Medicare & Medicaid Services; March
2010. Available at: http://www.hcahpsonline.com/qaguidelines.aspx.
National Survey of Children With
Special Health Care
U.S. Department of Health and Human Services (HHS), Health
Resources and Services Administration (HRSA), Maternal and Child Health Bureau
(MCHB) in partnership with the Centers for Disease Control and Prevention
(CDC), National Center for Health Statistics (NCHS).
Mode of Administration
Telephone interviews for 2005-2006 survey were conducted by
NCHS using computer-assisted telephone interviewing (CATI). Trained
interviewers called randomly generated numbers to find households with one or
more children under age 18. Parents or guardians were asked a series of
questions for all children in the household to identify those with special
health care needs. If CSHCN were identified in the household, an
indepth interview was conducted for one randomly selected
child with special health care needs.
Survey Sample Design
The NSCSHCN is a module of the State and Local Area
Integrated Telephone Survey (SLAITS) and uses the same design approach and
sampling frame as the National Immunization Survey (NIS); the NSCSHCN immediately
follows the NIS in selected households. Independent random samples were taken
in all 50 States and the District of
Columbia; approximately 750 CSHCN interviews were
conducted for each State's CSHCN population, supplemented by a national
referent sample of 4,945 non-CSHCN respondents. Survey data are weighted to
reflect the population of noninstitutionalized
children under age 18 in each State.
Primary Survey Content
The NSCSHCN provides detailed State and national
parent-reported information on the health status and health care system
experiences of children with special health care needs and their families.
Topics covered by the survey include health and functional status, status and adequacy
of insurance coverage, access to health care services, impact of children's
special needs on their families, family-centered aspects of services, and care
Children under age 18 with special
health care needs. Children with special health care needs are defined
as those who have, or are at increased risk for, a chronic physical,
developmental, behavioral, or emotional condition and who also require health
and related services of a type or amount beyond what is typically required by most
Gender, age, race/ethnicity, family
structure, and household income.
Two surveys have been conducted: 2001 and 2005-2006. New
data elements, wording changes, and skip pattern revisions were introduced
between the surveys.
National and State.
Agency home pages: http://mchb.hrsa.gov/,
Data system home page: http://cshcndata.org/Content/Default.aspx.
Blumberg SJ, Welch EM, Chowdhury
SR, et al. Design and operation of the National Survey of Children With Special
Health Care Needs, 2005-2006. Vital Health Stat 1(45); 2008.
Publication No. (PHS) 2009-1321.
Available at: http://www.cdc.gov/nchs/data/series/sr_01/sr01_045.pdf.
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McPherson M, Arango P, Fox H, et
al. A new definition of children with special health care needs. Pediatrics
National Cancer Data Base (NCDB)
Operation of the NCDB is jointly supported by the Commission
on Cancer (CoC) of the American College of Surgeons (ACoS) and the American Cancer Society (ACS).
The NCDB is a nationwide facility-based oncology database
that currently captures 75% of all newly diagnosed cancer cases in the United
States annually. The NCDB holds information on more than 20 million cases of
reported cancer diagnoses since 1985 and continues to grow.
All hospitals with CoC-approved
cancer programs are required to submit data annually for all patients diagnosed
or treated for a cancer diagnosis. More than 1,400 participating hospitals
respond to a call for data, submitting case reports for a specified calendar
year approximately 9 months after the calendar year.
CoC-approved 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: Revised for 2004 (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
Gender, age at cancer diagnosis, and
Continuously since 1985. Data
elements collected and format of these elements have changed over time.
National; nine U.S. Census Bureau
regions; metropolitan and nonmetropolitan areas.
NCDB home page: http://www.facs.org/cancer/ncdb/.
NCDB overview: http://www.facs.org/cancer/coc/ncdboverview.html.
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
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.
Patient Experience Survey in Primary Care (PES)
Massachusetts Health Quality Partners (MHQP), funded by
four of its member health plans—Blue Cross Blue Shield of Massachusetts,
Fallon Community Health Plan, Harvard Pilgrim Health Care, and Health New
Mode of Administration
The survey was
fielded in two rounds using both mail and Internet modes for response.
Nonrespondents were sent a second survey package, identical
to the first, 3 to 4 weeks after the initial mailing.
Survey Sample Design
The survey included patients being served in primary care
practices with at least three doctors in the MHQP Master Physician Directory.
adult and child patients surveyed for each site were randomly drawn based on
visit and membership data from four participating health plans.
The survey was completed by 51,000 adult patients and
20,000 parents of pediatric patients receiving care in more than 400 medical
practices in Massachusetts.
The response rate was 42%. The Technical Appendix available at http://www.mhqp.org/quality/pes/pesTechApp.asp?nav=031638
has detailed information about sample design and related technical issues.
Primary Survey Content
The survey asked
patients to report about their experiences with a particular named primary care
physician and with that physician's practice.
of Doctor-Patient Interactions:
- Communication (how well doctors communicate with patients).
- Integration of care (how well doctors coordinate care).
- Knowledge of the patient (how well doctors know their patients).
- Health promotion (how well doctors give preventive care and
Features of Care:
- Organizational access (getting timely appointments, care, and
- Visit-based continuity (seeing your own doctor).
- Clinical team (getting quality care from other doctors and nurses
in the office).
- Office staff (getting quality care from staff in
the doctor's office).
Massachusetts residents under age 65.
Agency home page: http://www.mhqp.org.
Data system home
Quality insights: 2007 patient experiences in primary care.
Technical appendix. Watertown, MA: Massachusetts Health
Quality Partners; no date. Available at: http://www.mhqp.org/quality/pes/pesTechApp.asp?nav=031638.
University of Michigan Kidney Epidemiology and Cost
University of Name
funding from the U.S. Department of Health and Human Services, Centers for
Medicare & Medicaid Services (CMS).
The Kidney Epidemiology and Cost
Center at the University of Michigan
(UM-KECC) is dedicated to the study of the cause, treatment, and prevention of
UM-KECC maintains a
comprehensive historical patient and provider-level data on about 1.8 million end
stage renal disease (ESRD) patients.
The ESRD database consists of
information drawn primarily from the CMS ESRD
Program Management and Medical Information System, the Annual Facility Survey,
and Medicare dialysis and hospital payment records derived from Medicare claims
supplemented by data from the Social Security Administration. These
CMS-supplied data are comprehensive for Medicare patients. For non-Medicare
patients, the database contains limited data from a variety of sources,
including data from the CMS Medical Evidence Form, the Organ Procurement and
Transplant Network, the Death Notification Form, and the Social Security Death
Data on patients receiving ESRD services, services
rendered to ESRD patients, status, and outcomes. Data for Medicare patients are
Data include transplant status, wait list status, hospital
admissions, hematocrit levels, urea reduction ratio
ranges, dialytic modalities, limited laboratory
values, death, primary cause of ESRD, height, weight, place of service, and employment
ESRD patients in
the United States.
Age, gender, race, ethnicity, and State
1999 to present. Refer to entry
for United States Renal Data System (USRDS) for information on prior years (1993-1999).
National and State levels.
Agency home page: http://www.med.umich.edu.
Data system home page: http://www.sph.umich.edu/kecc/.
Guide to the 2003 Dialysis Facility Reports: overview,
methodology, and interpretation. Ann Arbor, MI: University of Michigan Kidney
Epidemiology and Cost Center; August 2003.
Guide to the 2004
Dialysis Facility Reports: overview, methodology, and interpretation. Ann
Arbor, MI: University of Michigan Kidney Epidemiology and Cost Center; August
Return to Contents
Current as of June 2010
2009 National Healthcare Quality & Disparities Reports: Data Sources Appendix. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/qual/qrdr09/datasources/