Data Sources—Professional Organizations and Associations
2011 National Healthcare Quality and Disparities Reports
American Hospital Association (AHA), Information Technology Supplement
Sponsor
AHA.
Description
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, facility, community benefit, and utilization. In 2008, 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.
Survey Sample Design
AHA-registered hospitals make up 98% of the surveyed hospitals, which means the hospital meets the AHA criteria for registration as a hospital facility. In 2008, 951,045 registered hospitals were involved in the surveys. State and local associations, Medicare and Medicaid centers, national organizations, and governmental 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.
Primary Survey Content
The AHA Hospital Survey reports statistics that include current and historic data on utilization, personnel, revenue, expenses, managed care contracts, community health indicators, physician models, technology, electronic record system, number of beds and admissions, and urban/rural status. The 2008 IT supplement queries hospital representatives about the adoption of electronic medical records and the scope of computer functionalities the facility used.
Population Targeted
All hospitals in the United States.
Demographic Data
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, use of electronic systems for prescribing, and sharing of patient information across providers.
Family Evaluation of Hospice Care (FEHC) Survey
Sponsors
National Hospice and Palliative Care Organization (NHPCO).
Description
FEHC is a survey that 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 data submission system and vendors submit client data files on a quarterly schedule. NHPCO maintains a multiyear FEHC data repository.
Survey Sample Design
FEHC is a postdeath survey that asks questions about families' perceptions of the care provided to the patient, as well as their own hospice experience.
Participation in 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%.
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 family.
Demographic Data
Age, gender, race/ethnicity, and educational level of decedents and respondents.
Schedule
Ongoing.
Contact Information
Organization 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 website. J Pain Symptom Manage 2005 Jul;30:9-17.
Healthcare Effectiveness Data and Information Set (HEDIS)
Sponsor
National Committee for Quality Assurance (NCQA).
Description
HEDIS® is a set of standardized performance measures designed to assess the quality of health care and services provided by managed care plans. It is a common data collection instrument that the Centers for Medicare & Medicaid Services has adopted for its own use in monitoring plans. It was developed by NCQA to give purchasers and consumers the ability to evaluate the quality of different health plans and to make their plan decisions based on demonstrated value rather than simply cost.
Altogether, HEDIS consists of 75 measures across 8 domains of care.
Primary Survey Content
HEDIS® is focused on eight measure areas:
- Effectiveness of care.
- Access/availability of care.
- Satisfaction with the experience of care.
- Use of services.
- Cost of care.
- Health plan descriptive information.
- Health plan stability.
- Informed health care choices.
Survey Sample Design
HEDIS is a tool used by more than 90% of America's health plans to measure performance on important dimensions of care and service. Altogether, HEDIS consists of 75 measures across 8 domains of care. Because so many plans collect HEDIS data, and because the measures are so specifically defined, HEDIS makes it possible to compare the performance of health plans on an "apples-to-apples" basis. Health plans also use HEDIS results themselves to see where they need to focus their improvement efforts.
NCQA-certified survey vendors carry out HEDIS® survey data collection. NCQA trains and certifies survey vendors to collect CAHPS® (Consumer Assessment of Healthcare Providers and Systems) 4.0H (HEDIS version) Adult Survey and CAHPS 4.0H Child Survey results from health plans according to the HEDIS protocols. Once certified, survey vendors may enter into contracts with health plans to survey a sample of members. It is anticipated that approximately 500 health plans will report CAHPS 4.0H survey results in 2012.
Protocols for collecting and reporting HEDIS survey measures are updated annually. Occasionally, new survey measures are added. Currently there are four HEDIS surveys, covering health maintenance organization, point of service, and preferred provider organization products:
- CAHPS Health Plan Survey 4.0H Adult Version, Commercial.
- CAHPS Health Plan Survey 4.0H Adult Version, Medicaid.
- CAHPS Health Plan Survey 4.0H Child Version, Children With Chronic Conditions (applicable to commercial and Medicaid).
- CAHPS Health Plan Survey 4.0H Child Version, Children Without Chronic Conditions (applicable to commercial and Medicaid).
Population Targeted
Medicaid, Medicare, commercial insurance. The care needs of different populations vary, and health plan systems for managing care may be quite population specific.
Demographic Data
Age, sex. race, and education.
Years Collected
Since 1993.
Data Collection Schedule
Annual.
Geographic Estimates
National and regional.
Contact Information
Agency home page: http://www.ncqa.org .
Data system home page: http://www.ncqa.org/tabid/59/Default.aspx .
National Cancer Data Base (NCDB)
Sponsors
Commission on Cancer (CoC), American College of Surgeons (ACoS); and the American Cancer Society (ACS).
Description
NCDB is a nationwide facility-based oncology database that annually captures 70% of all newly diagnosed cancer cases in the United States. 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 year.
CoC-accredited cancer program registries collect and submit data elements to 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
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. In addition, 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.
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/ .
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.