Tools for Patients and Health Care Consumers

Americans are demanding greater value and quality in their health care. To achieve these goals in today's rapidly changing health care environment, consumers need reliable, evidence-based information to help them choose among health care plans, practitioners, and facilities. They also need information to help them participate more actively and effectively in their personal health care decisions. AHRQ is committed to providing the information consumers want and need to help them get the best possible health care.

The Consumer Assessment of Health Plans Study (CAHPS®) is an easy-to-use kit of survey and reporting tools that provides reliable information to help consumers and purchasers assess and choose among health plans. Information from CAHPS® surveys was available to help more than 90 million Americans with their 2000 health care benefits decisions.

The CAHPS® team and AHRQ work closely with the health care industry and consumers to ensure that the CAHPS® tools are useful to both individual consumers and to employers and other institutional purchasers of health plans. Collaborations include the following:

• Beneficiaries enrolled in 280 Medicare managed care plans assessed their plans, and this information was published in a handbook sent to nearly 40 million Medicare beneficiaries. The information also was made available on the Medicare.gov Web site.
• AHRQ and the Centers for Medicare & Medicaid Services (CMS) collaborated with the CAHPS®) consortium to develop a Medicare CAHPS® Disenrollee Survey. This survey of beneficiaries who had recently left a Medicare managed care plan was fielded by CMS in FY 2000. Approximately 80 percent of this survey related to quality. Survey data allow users to distinguish between disenrollment decisions that are unrelated to quality (e.g., enrollee moving out of the area that the plan serves) and disenrollment that is related to quality (for example, limited access to specialists).
• A version of CAHPS® to assess care at the group practice level was developed in collaboration with the California Health Care Foundation and the Pacific Business Group on Health. The survey was developed in response to strong consumer interest in the ability of physicians in group practices to provide high-quality care. In CAHPS® II, the team will develop ways of reporting CAHPS® data to consumers as well as to group practices. An additional goal is to develop strategies for working with physicians to improve areas that consumers identified as troublesome.
• The CAHPS® consortium and the Foundation for Accountability, with support from the David and Lucile Packard Foundation, developed a CAHPS® survey to identify children with special health care needs and collect information on how well health plans are meeting those needs. This tool is used by numerous State Medicaid and other agencies involved in managing children's health insurance programs to help them meet the requirements set forth in the 1997 Balanced Budget Act. The National Committee for Quality Assurance has included this survey as a requirement in the HEDIS® reporting set.
• AHRQ and CMS are collaborating in the development of a CAHPS® survey to obtain consumers' assessments of health care and services received in nursing homes. Survey development and sampling and data collection procedures were completed in FY 2001. Additional testing was carried out in FY 2002. Data collected from nursing home residents and next of kin will be used to help people choose a nursing home.

In May 2002, AHRQ funded three applications submitted under the CAHPS® II request for applications (RFA) at a total cost of $2.5 million. CAHPS® II will focus on development and testing of new and more effective ways to report quality data to consumers, patients, caregivers, and purchasers. It also will permit translation of the questionnaires and reports into Spanish and other languages. This initiative includes the development of assessment instruments for people with mobility impairments and more refined questionnaire items for people who receive care through preferred provider organizations (PPOs). The team also will work with caregivers and plans to use CAHPS® data in quality improvement efforts.

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Making Quality Count for Patients and Consumers

One of AHRQ's most important priorities is translating research into practice. We are constantly working to make sure research findings are put to work to help patients and consumers get the best possible health care. The following examples illustrate research projects funded by AHRQ in FY 2002 that are focused on providing health care quality information that will be useful to patients and consumers. The newly funded projects are:

• Improving communication in the medical interview. There is growing evidence that physicians do not give patients enough time to express their concerns during a medical interview. Physicians often interrupt patients before they have completely explained why they are seeking help. Nearly three-quarters of patients believe that inadequate time spent by physicians with patients is a very important cause of medical errors. Longer patient visits, however, often are not possible because of constrained resources. In response to this need to improve communication during medical encounters, researchers are implementing and evaluating a piloted educational intervention, the Establishing Focus (EF) protocol, in a community-based primary care network to train providers in the skills needed to provide high quality care in a time-limited encounter. EF was designed to improve providers' skills related to relationship-building, agenda setting, shared decisionmaking, and time management. EF training has enormous potential for improving the quality of ambulatory care, including better health outcomes and patient and provider satisfaction, at a modest, non-recurring cost.
• Physician skill at providing end-of-life care. The long-term objective of this project is to improve the quality of end-of-life care provided by physicians. Specifically, the goals are to (1) establish the measurement characteristics of a questionnaire to assess physician performance at specific end-of-life care skills; (2) assess the quality of end-of- life care provided by physicians who commonly care for dying patients, including oncologists, pulmonologists, cardiologists, and nursing home physicians; and (3) explore ways to implement interventions for improving the way physicians care for dying patients. The study involves 120 physicians in the Northwest and Southeast United States. The results of the study will identify specific strengths and weakness in end-of-life care provided by individual physicians and by physicians within the specialties under study. It also will provide exploratory data on present and potential nursing roles in improving end-of-life care. The findings will lead to targeted educational and systemic interventions to improve the quality of care for patients at the end of life.
• Institutional permeability in long-term care. The public image of residential long-term care in the United States, particularly nursing facilities, is of places where older adults—separated from home, family, friends, and past lifestyles—become disengaged from society and await death. Pilot research in a rural nursing facility has questioned the inevitability of this image and suggested that, insofar as long-term care facilities are able to sustain a high level of institutional permeability (defined as the dynamic exchange of people, communication, and support between a long-term care facility and the community in which it is located), it is possible to enhance well-being and sustain a high quality of life by reinforcing continuity in resident's lives and maintaining links with the world beyond the doors of the facility. These researchers will investigate this hypothesis in an array of different nursing and assisted living facilities (urban-rural, ethnically diverse-ethnically homogeneous, small-large). Their findings may lead to a change in the way society views long-term care, as well as the development of new strategies for enhancing the quality of life for elders living in long-term care facilities.

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National Healthcare Quality Report

AHRQ is developing the first-ever annual report on the quality of health care in the United States, as called for in the agency's reauthorization legislation, which became law in 1999. The goal of the report, now in development and due out in 2003, is to provide a clear, easily understood picture of the quality of health care in America. The development of a national report on health care quality is an important step in improving the quality of the Nation's health care system and addressing the health care needs of priority populations. Go to Research on Health Care for Priority Populations in this report to learn about AHRQ's program priorities and activities focused on women, children, and minorities.

The report project is being led by AHRQ with collaboration from the Centers for Disease Control and Prevention's (CDC's) National Center for Health Statistics. An interagency work group is guiding the development of this landmark first report. Other members of the work group include the Department's Office of the Assistant Secretary for Planning and Evaluation, the Centers for Medicare & Medicaid Services, the Food and Drug Administration, the Health Resources and Services Administration, the Indian Health Service, the National Institutes of Health, and the Substance Abuse and Mental Health Services Administration.

As of FY 2002, work on the National Healthcare Quality Report (NHQR) has proceeded in four areas:

• Developing a conceptual framework for reporting. AHRQ commissioned the Institute of Medicine to develop the conceptual framework for the NHQR. The IOM formed a 14-member committee of leading experts in quality. They recommended a conceptual framework that includes both dimensions of care (for example, safety, effectiveness, patient-centeredness, timeliness, equity) and patient needs (for example, staying healthy, getting better, living with illness or disability, coping with the end of life). The quality monitoring system developed for the NHQR will be organized around this framework.
• Identifying potential measures to populate the framework. AHRQ has formed an interagency work group to identify candidate measures for the report. The work group developed a call for measures that was sent to all relevant Federal agencies, and the IOM initiated a similar call to the private sector. The work group is evaluating candidate measures received from these sources with the goal of populating the reporting framework developed by the IOM.
• Identifying data sources for potential measures. Potential data sources for the NHQR include population-based data collection efforts, establishment/provider-based data collection efforts, vital statistics, regulatory data collection efforts, and surveillance activities. We expect that the first NHQR will rely heavily on Federal databases. As time goes on, private data sources will likely take on added importance.
• Initiating audience research on format and design options for the report. AHRQ is conducting research to identify the needs of potential audiences for the report and to develop a report that meets those needs. AHRQ has reviewed existing reporting systems and conducted a comprehensive literature search for information on quality reporting programs, both here and abroad.

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National Healthcare Disparities Report

AHRQ is also developing the first-ever report on prevailing disparities in health care delivery in the United States. A large and consistent body of research, much of it funded by AHRQ, has demonstrated persistent disparities in health care quality and access associated with race, ethnicity, socioeconomic position, sex, age, functional disability, and place of residence.

The agency's reauthorization legislation enacted in late 1999 directed AHRQ to develop a report, beginning with fiscal year 2003, on prevailing disparities in health care delivery as they relate to racial factors and socioeconomic factors in priority populations. The National Healthcare Disparities Report (NHDR) will serve as a companion document to the National Healthcare Quality Report, providing greater depth and insights into differences in health care quality for priority populations.

This report will be an unprecedented effort to present a comprehensive picture of prevailing disparities in health care in the United States, and it will identify opportunities for improving care for priority populations. The report also will provide a benchmark for evaluating the success of programs to reduce disparities in health care.

The project is being led by AHRQ and will involve collaboration with multiple components of the Department of Health and Human Services. The report is scheduled for publication in September 2003. As of FY 2002, work on the NHDR is proceeding as follows:

• Conceptual framework. The NHDR will build on the conceptual framework developed for the NHQR, its congressionally mandated sister report. This framework is a matrix of health care and consumer perspectives on health care needs. The framework includes dimensions of health care quality, along with access to care, use of services, and costs of services.
• NHDR measures and data sources. AHRQ has sought input from a wide range of stakeholders who helped to identify additional datasets and develop the final set of measures. The data group, which includes AHRQ staff with special expertise in data analysis, has focused on defining racial and socioeconomic factors and priority populations, identifying data sources, and developing preliminary access, use, and cost measures relevant to studying disparities. A department-wide NHDR Interagency Work Group has provided valuable advice and comments on draft definitions and measures and identified new data sources for the report. AHRQ staff also have collaborated with external data experts from multiple organizations to obtain input on measures and data sources.
• NHDR audience research. AHRQ is currently conducting research to identify the needs of potential audiences for the report in an effort to develop a final product that is both useful and responsive to the needs of users.

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National Quality Measures Clearinghouse™

The National Quality Measures Clearinghouse™ (NQMC) is a Web-based repository of tools for measuring health care quality. The NQMC was established in FY 2002 by AHRQ for use by health care providers, managers, policymakers, and others who are interested in health care quality measurement. The NQMC is a significant enhancement of the Agency's CONQUEST (Computerized Needs-Oriented Quality Measurement Evaluation System) library of quality measures.

Criteria for inclusion of measures in the NQMC were developed based on input from national organizations, consensus-development workgroups, and researchers in the field. In order to be included in the NQMC, measures must be in use currently or in pilot testing and must satisfy the inclusion criteria. Measures nominated for inclusion in the NQMC are screened initially according to three broad categories:

• Importance of the measure.
• Scientific integrity.
• Feasibility.

The submission of measures to be considered for inclusion in the NQMC is an ongoing process. Measures are submitted to the NQMC by national, State, and local organizations involved in developing and/or using quality measurement tools. These include health care systems, accreditation organizations, professional associations, research institutions, licensing boards, and other relevant organizations.

The NQMC is under development and is scheduled to become operational at www.qualitymeasures.ahrq.gov early in calendar year 2003.

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