Data Sources—Miscellaneous and Multiple-Source Data Sponsors

California Health Interview Survey (CHIS)

Sponsors

The 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.

Mode of Administration

The 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 (CATI) system.

Survey Sample Design

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 combined.

Primary Survey Content

The CHIS 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 specific surveys.

Population Targeted

Sample representative of California's noninstitutionalized population living in households.

Demographic Data

Age, gender, race/ethnicity, educational level, English proficiency, and place of birth.

Schedule

Every other year since 2001.

Contact Information

Agency home page: http://www.healthpolicy.ucla.edu/, http://www.cdph.ca.gov/Pages/default.aspx, http://www.dhcs.ca.gov/Pages/default.aspx.

Data system home page: http://www.chis.ucla.edu.

References

California 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)

Sponsors

National Hospice and Palliative Care Organization (NHPCO).

Model of Administration

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. A published 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.

Survey Sample Design

The FEHCS is a postdeath survey that asks questions about families' perception of the care provided 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. �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, 2009 was 38%.

Primary Survey Content

The 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 family.

Demographic Data

Age, gender, race/ethnicity, and educational level of decedents and respondents.

Schedule

Ongoing.

Contact Information

Agency home page: http://www.nhpco.org.

References

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)

Sponsors

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).

Description

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 database.

Population Targeted

Data from the HIVRN are not nationally representative.

Years Collected

Since 2000.

Schedule

Annual abstraction of medical records.

Geographic Estimates

Although the data collection sites are located in every region of the country, regional projections cannot be made from HIVRN data.

Contact Information

Agency home page: http://www.ahrq.gov.

References

HIV Research Network. Hospital and outpatient health services utilization among HIV-infected patients in care in 1999. J Acquir Immune Defic Syndr 2002;30:21-26.

Hospital CAHPS (HCAHPS)

Sponsor

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 care.

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 s.

Population Targeted

Discharged hospital patients age 18 and over.

Demographic Data

Race, ethnicity, and education.

Years Collected

Beginning fall 2006.

Schedule

Annual.

Contact Information

Agency home pages: http://www.cms.hhs.gov/, https://www.ahrq.gov/.

Data system home page: http://www.hcahpsonline.org/.

References

CAHPS® 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 Needs (NSCSHCN)

Sponsors

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 coordination.

Population Targeted

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 children.

Demographic Data

Gender, age, race/ethnicity, family structure, and household income.

Years Collected

Two surveys have been conducted: 2001 and 2005-2006. New data elements, wording changes, and skip pattern revisions were introduced between the surveys.

Schedule

Intermittent.

Geographic Estimates

National and State.

Contact Information

Agency home pages: http://mchb.hrsa.gov/, http://www.cdc.gov/nchs/.

Data system home page: http://cshcndata.org/Content/Default.aspx.

References

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. [Plugin Software Help]

McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998;102:137-40.

National Cancer Data Base (NCDB)

Sponsors

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).

Description

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.

Population Targeted

Cancer patients in the United States.

Demographic Data

Gender, age at cancer diagnosis, and race/ethnicity.

Years Collected

Continuously since 1985. Data elements collected and format of these elements have changed over time.

Schedule

Annual.

Geographic Estimates

National; nine U.S. Census Bureau regions; metropolitan and nonmetropolitan areas.

Contact Information

NCDB home page: http://www.facs.org/cancer/ncdb/.

NCDB overview: http://www.facs.org/cancer/coc/ncdboverview.html.

References

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.

Patient Experience Survey in Primary Care (PES)

Sponsor

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 England.

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. �The 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.

Quality 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 advice).

Organizational Features of Care:

• Organizational access (getting timely appointments, care, and information).
• 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).

Population Targeted

Massachusetts residents under age 65.

Years Collected

2007 and 2009.

Contact Information

Agency home page: http://www.mhqp.org.

Data system home page: http://www.mhqp.org/quality/pes/pesMASumm.asp?nav=031600.

References

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 Center

Sponsor

Type University of Name Michigan with funding from the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services (CMS).

Description

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 kidney disease. �

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 Master File.

Primary Content

Data on patients receiving ESRD services, services rendered to ESRD patients, status, and outcomes. Data for Medicare patients are comprehensive.

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 status.

Population Targeted

ESRD patients in the United States.

Demographic Data

Age, gender, race, ethnicity, and State of residence.

Years Collected

1999 to present. Refer to entry for United States Renal Data System (USRDS) for information on prior years (1993-1999).

Schedule

Ongoing.

Geographic Estimates

National and State levels.

Contact Information

Agency home page: http://www.med.umich.edu.

Data system home page: http://www.sph.umich.edu/kecc/.

References

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 2004.