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Research on the Health of Priority Populations
Health Care for Minorities, Women, and Children
The overall health of the American people has improved over the last several decades, but not all Americans have shared equally in these improvements. Among nonelderly adults, for example, 17 percent of Hispanic and 16 percent of black Americans report their health status as only fair or poor, compared with 10 percent of white Americans. How much do differences in the quality and types of health care services that people receive contribute to disparities in health? What strategies can we employ to overcome these differences in care? Answers to these and many other related questions are being sought through AHRQ-sponsored research.
AHRQ is preparing a national report on health care quality to be published for the first time in FY 2003. It will address many health care issues that are particularly important to vulnerable populations. Select for more information on the National Healthcare Quality Report.
Disparities in health care and outcomes persist despite improvements in health for the Nation as a whole. AHRQ research found that race and ethnicity influence a patient's chance of receiving many specific procedures and treatments. Of nine hospital procedures investigated in one study, five were significantly less common among black patients than white patients; three of the five procedures also were less common among Hispanics, and two were less common among Asian Americans. Other AHRQ-supported studies have revealed other disparities in patient care, including the following examples.
- Blacks are 13 percent less likely to undergo coronary angioplasty and one-third less likely to undergo bypass surgery than whites.
- Among preschool children hospitalized for asthma, only 7 percent of black and 2 percent of Hispanic children, compared with 21 percent of white children, are prescribed routine medications to prevent future asthma-related hospitalizations.
- The length of time between an abnormal screening mammogram and the followup diagnostic test to determine whether a woman has breast cancer is more than twice as long for Asian American, black, and Hispanic women as it is for white women.
- Blacks with HIV are less likely than other people with HIV to be on antiretroviral therapy, to receive preventive medicine for pneumonia, or to be given protease inhibitors.
- Black, Asian American, and Hispanic residents of nursing homes are far less likely than white residents to have sensory and communication aids, such as glasses and hearing aids.
We ensure that the Agency's research emphasizes the needs of priority populations who generally are underserved by the health care system and underrepresented in research. In FY 2001, the Agency began assembling an office dedicated to research on priority populations that will focus on children, women, and minorities, the elderly and aging population, people with disabilities and/or chronic diseases, people who are terminally ill, people living in the inner city, rural residents, and low-income individuals and families.
Other AHRQ efforts undertaken in this area in 2001 include:
- Established nine Excellence Centers to Eliminate Ethnic/Racial Disparities (EXCEED). This 5-year effort will bring together teams of new and experienced investigators to analyze the factors that contribute to ethnic and racial inequities in health care and identify practical tools and strategies to eliminate the disparities.
- Began data development required to produce the National Disparities Report. The report will address trends in health care disparities and compare access, use, and quality of health care services as they relate to race, ethnicity, and socioeconomic factors in priority populations.
- Expanded the HIV Research Network. This expansion will allow researchers to compare current data on HIV care and examine whether disparities in care among groups are being addressed, as well as identify any new patterns in treatment. The Network receives data from a large number of HIV providers around the Nation in order to provide valid and reliable information about the determinants of resource use by people with HIV disease. Select for more information on the HIV Research Network.
- Developed numerous Spanish-language publications. These materials support patient decisionmaking—for example, the Consumer Assessment of Health Plans Study (CAHPS®), which assesses consumers' satisfaction with their health care and helps them select among health plans, and booklets from the Put Prevention Into Practice program that people can use to track whether they or their children have received recommended preventive services.
AHRQ and its predecessor agencies (NCHSR and AHCPR) have been involved in research on minority health issues for more than three decades. AHRQ's investments in minority health services research have resulted in numerous findings that are helping to shed light on the disparities experienced by racial and ethnic minorities and expand what is known about the reasons for those disparities.
In FY 2001, AHRQ funded a number of grants with a major emphasis on minority health. This effort includes the launch of the Minority Research Infrastructure Support Program (M-RISP), a training program to increase the number of minority health services researchers and to expand the Nation's health workforce to be more diverse and representative of the racial and ethnic populations in America.
Examples of findings from recent AHRQ supported research follow.
- About one black woman in four over 55 years of age has diabetes, which is nearly twice the rate of diabetes among white women. Hispanic women are almost twice as likely to have diabetes as non-Hispanic women of similar ages.
- Although breast cancer mortality declined 5.6 percent between 1990 and 1994, the decline was much greater among white women at 6.1 percent than among black women at 1 percent.
- Black Medicare beneficiaries are far less likely than white beneficiaries to receive flu shots, regardless of whether they are enrolled in a managed care or fee-for service health plan—68 percent of whites versus 46 percent of blacks received flu shots.
- Hispanics in their 50s are much less likely than same-age whites or blacks to take medication to control high blood pressure.
AHRQ supports research that improves the quality, outcomes, and access to effective health care for women. One specific focus of the women's health program is research that enhances active life expectancy for older women. Although women in the United States are living longer than ever before, on average they experience 3.1 years of disability at the end of life—that is, they experience a decreased ability to function independently due to chronic illnesses. Today, the chronic conditions of heart disease, cancer, and stroke account for 63 percent of deaths among American women, and heart disease causes more than one-third of these deaths.
AHRQ currently is supporting development of an unprecedented evidence report to clarify which diagnostic and therapeutic interventions for heart disease are most effective for women, as well as studies that evaluate strategies to improve functional outcomes for older women.
A second major focus for AHRQ's women's health research consists of studies to improve the response of health care organizations and clinicians to victims of domestic violence, the second leading cause of injuries and death among women of childbearing age. Working closely with the HHS's Office of Women's Health and private-sector organizations, AHRQ convened a meeting of experts to develop a health services research agenda focused on the health care consequences of domestic violence.
This agenda resulted in a targeted research initiative consisting of projects, conducted in a broad array of practice settings, to improve detection and management of women who experience domestic violence. AHRQ hosted a Senior Scholar-in-Residence to work on projects to provide scientific information on the cost, quality, and outcomes of domestic violence intervention programs available to victims in health care settings. The women will be followed over time to identify interventions that improve the health and safety of victims, predict and improve health care use, prevent and reduce the occurrence of domestic violence, and develop better techniques to identify women at risk for domestic violence.
To support the next generation of researchers, AHRQ is collaborating with the National Institutes of Health, Office of Research on Women's Health, in the Building Interdisciplinary Research Careers in Women's Health program (BIRCWH) to include a health services research component in support of the interdisciplinary focus of the programs to be developed.
Selected examples of recent findings from AHRQ-supported studies include:
- The incidence of coronary heart disease in women has increased over the past decade, yet evidence suggests that women typically receive fewer high-technology cardiac procedures than men. Before age 75, women are more likely than men to die in the hospital after a heart attack.
- ER doctors misdiagnose about 2 percent of patients with heart attack or stable angina because they do not have chest pain or other symptoms typically associated with heart attack. When these patients are mistakenly sent home from the ER, they are twice as likely to die from their heart problems as similar patients who are admitted to the hospital.
- Blacks and women are significantly less likely to be referred for cardiac catheterization than whites and men.
Improving outcomes, quality, and access to health care for America's 70 million children and adolescents is a critical goal of health services research and central to the mission of AHRQ. Understanding what's needed to improve health care delivery for children and adolescents requires a special research focus. Because children are growing and developing, their health care needs and resource use differ from adults. Unlike adults, they usually depend on others for access to care and determinations about the quality of care they receive. Several AHRQ-funded studies on children's health have shown the importance of experience in caring for children.
AHRQ's work helps to fill the major gap that exists in evidence-based information on the health care needs of children and adolescents. Such information is essential to appropriately guide clinical and policy decisions. The need for this information has become particularly critical since the implementation of the State Child Health Insurance Program (SCHIP).
The Child Health Insurance Research Initiative (CHIRI™), cofunded by AHRQ, the David and Lucile Packard Foundation, and the Health Resources Services Administration (HRSA), is a 3-year research program designed to identify which health insurance and delivery features work best for low-income children, particularly minority children and those with special health care needs. Results from the nine CHIRI™ projects will aid in understanding how to improve health care for vulnerable children, including children who remain uninsured, and how to improve the institutions that serve them. Researchers and funders participate in a collaborative process to strengthen individual studies and increase the generalizability of results, making it possible for CHIRI™ findings to be applied across locations, populations, and insurance design and organizational delivery system features.
CHIRI™ researchers work closely with local and national policymakers to ensure that the projects generate information that is useful and timely for decisionmakers. For example:
- In Kansas, CHIRI™ researchers found that many enrollees in the Kansas SCHIP had previously been recipients of Medicaid, and a significant proportion subsequently transferred from SCHIP to Medicaid. In addition, the researchers found that 23 percent of Kansas families who have a child in SCHIP also have a child in Medicaid. These findings were shared with State legislators and administrators of Kansas' public insurance programs and contributed to a decision to integrate Kansas Medicaid and SCHIP under a single delivery system.
- The method used by SCHIP programs to periodically redetermine the eligibility of enrollees has an impact on continuity of coverage. State eligibility redetermination requirements for SCHIP enrollees generated large disenrollments in three of four States that were studied, though up to one-quarter of children returned within 2 months. In the fourth State, a passive reenrollment policy eliminated excess disenrollment at the point of eligibility redetermination.
To address the scarcity of quality measures for children, AHRQ is supporting the development, testing, and implementation of the Pediatric Quality of Life measures. Also, the National Committee for Quality Assurance for HEDIS adopted the children's component of AHRQ's Consumer Assessment of Health Plan Study (CAHPS) survey—the first time a health-plan-oriented survey of children was administered nationwide.
In FY 2001, AHRQ supported child-relevant studies focused on outcomes, quality and patient safety, and cost, use, and access. Researchers involved in these studies are working to:
- Develop the first comprehensive analysis of the management of suspected child abuse in primary care practices.
- Develop and evaluate a computerized laptop system for use in the examining room of primary care practices as an extension of an existing in-house prescribing system to improve the care of children with attention-deficit/hyperactivity disorder.
- Investigate the impact of having a child with asthma and the burden this condition causes on the family's resources (e.g., finances, the parents' time and availability for care, and access and barriers to health care).
- Identify strategies to improve ambulatory antibiotic prescribing practices. For example, the researchers will measure and assess changes in antibiotic prescription rates for sore throat in children and bronchitis in adults using managed care and Medicaid data from physicians' practices.
- Focus on children with special health care needs to identify those factors parents consider when choosing a managed care plan, identify difficulties children have in accessing care, and assess several quality of care indicators, such as receipt of preventive services (e.g., immunizations), dental care, referrals to specialists, appropriateness of medication use, hospitalizations for ambulatory care-sensitive conditions, and continuity of care.
Recent findings from AHRQ-supported child health research:
- Children who have chronic conditions and are enrolled in Medicaid receive most of their care from generalist physicians rather than specialists.
- The P3C, a new measure of parents' perceptions of primary care quality, was developed by AHRQ-supported researchers and found to be practical, reliable, and valid. The measure was tested in English, Spanish, Vietnamese, and Tagalog.
- Therapies and outcomes for pediatric head trauma patients vary across pediatric intensive care units (ICUs). Large randomized, controlled trials are needed to determine whether increased use of seizure medications or other therapies could improve outcomes.
- Children in Medicaid managed care receive care equal to that of privately insured children in terms of access to care, use of services, and satisfaction with care.
- Children are vaccinated later in the practices of providers who do not receive free vaccine supplies, those that refer uninsured children to a public vaccine clinic, and providers who over-interpret contraindications to vaccination.
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Rapid Cycle Research
Prior to the events of September 11, 2001, there was little experience in the United States with bioterrorist incidents. The reality of bioterrorism has focused attention on the need for a strong health infrastructure to coordinate, prepare for, and respond to acts of terrorism, particularly those involving biological or chemical agents.
AHRQ's investment in bioterrorism research draws from the recognition that clinicians, hospitals, and health care systems have essential roles in the public health infrastructure. AHRQ research focuses on the health care of the general population by training clinicians to recognize manifestations of bioterrorism agents and manage patients appropriately, assessing the preparedness of hospitals and health systems to respond to bioterrorism incidents, and helping State and local policymakers respond to bioterrorism.
Examples of products and tools supported by AHRQ that are currently or soon will be available include the following:
- Researchers at the University of Alabama at Birmingham and Research Triangle Institute have developed Web-based training modules to teach health professionals how to address varied biologicat agents. Separate modules exist for ER practitioners, radiologists, pathologists, and infection control specialists.
- Through collaborations with the University of Maryland, Emory University,
the District of Columbia Hospital Association, and Booz-Allen Hamilton, a questionnaire has been developed that can help assess the current level of preparedness of hospitals or health systems and their capacity to respond to bioterrorism attacks.
- In collaboration with the New York City Department of Health and the Mayor's Office of Emergency Management, AHRQ's Integrated Delivery System Research Network based at the Weill Medical College of Cornell University has developed a computer simulation model for city-wide response planning for bioterrorism attacks. This model for mass prevention of disease in the event of a bioterrorism incident will be validated by a live exercise funded by the Department of Justice.
- Researchers at the Children's Hospital of Boston are exploring the feasibility of building decision support models for information systems using linked health care data. These information systems would help to link the public health infrastructure with the clinical care delivery system to speed reporting and enhance rapid dissemination of relevant information. A preliminary product is a literature review that clarifies the potential of Web-based systems for clinicians to obtain timely information and report potential bioterrorism events to public health authorities.
- Researchers at the University of Pittsburgh and Carnegie-Mellon are continuing development of a Real-time Outbreak and Disease Surveillance (RODS) system for bioterrorism events. The purpose of RODS is to provide early warning of infectious disease outbreaks, possibly caused by an act of bioterrorism, so that treatment and control measures can be initiated to protect and save large numbers of people.
- The Science Applications International Corporation (SAIC) in collaboration with Johns Hopkins University, George Washington University, and the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has completed extensive work on assessing and recommending improvement in the linkages between the medical care, public health, and emergency preparedness systems to detect and respond to bioterrorism events.
- AHRQ's User Liaison Program is planning an audio teleconference in January 2002 for State and local health policymakers to inform them of related research findings that could help them assess and strengthen the capacity of the health care system within their jurisdictions to respond to bioterrorism.
- The Primary Care Practice-Based Research Network at the University of Indiana is using a city-wide electronic medical records system as a model for surveillance and detection of potential bioterrorism events across a wide range of health care facilities, including primary care practices, public health clinics, emergency rooms, and hospitals.
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Integrated Delivery System Research Network
Improving care practices and collecting evidence about what works and what does not work in our largely private health care system requires use of private-sector data and partnerships between researchers and providers of care. Private-sector databases generally are not accessible to most of the scientific research community.
The Integrated Delivery System Research Network (IDSRN), a new model of research developed this past year, links the Nation's top researchers and some of the largest health care systems with AHRQ. In so doing, it enables AHRQ researchers to conduct studies and collect information available only in the private sector to address HHS' public policy priorities and develop evidence that health system leaders can use to improve care. The IDSRN comprises nine partner organizations that provide care to over 50 million Americans, including privately insured patients, Medicare and Medicaid patients, the uninsured, ethnic and racial minorities, and rural and inner-city residents.
AHRQ funded 16 projects in FY 2001, with timelines that range from 12 to 18 months. Eleven of these projects focus on improving patient safety and working conditions for health care workers, and five focus on reducing disparities in health care delivery. Specifically, the researchers will:
- Examine the extent of variation in performance on HEDIS (Health Plan Employer Data and Information Set) measures for cardiovascular care and diabetes, a cardiac risk factor, by race/ethnicity, socioeconomic status, and sex across, between, and within health plans and evaluate the desirability and feasibility of stratified reporting of quality measures by health plans. In this study, which is now completed, researchers found moderate to large differences in health plan performance on multiple HEDIS measures by race and socioeconomic status, with some plans performing much better for black and low-income enrolles than others. They found that geocoding is a valid methodology for assessing disparities in the absence of data on the race and ethnicity of enrollees.
- Examine ways to improve the care delivered to women, children, minority populations, and patients with limited English proficiency. This will enhance the capacity of health plans and health care delivery systems to identify and address disparities in health care delivery within their populations.
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Primary Care Practice-Based Research Networks
Over the past decade, primary care practice-based research networks (PBRNs) have emerged as a promising approach to the scientific study of primary care. These "living laboratories" draw on the experience and insight of practicing clinicians to identify and frame research questions whose answers can improve the practice of primary care.
A PBRN is a group of ambulatory practices devoted principally to the primary care of patients, affiliated with each other (and often with an academic or professional organization) in order to investigate questions related to community-based practice. By linking these questions with rigorous research methods, the PBRN can produce research findings that are immediately relevant to the clinician and more easily translated into everyday practice. In addition, data are readily available on who receives care, how often they receive care, and where care is provided.
AHRQ's overall goal is to improve the capacity of PBRNs to expand the primary care knowledge base, establish mechanisms to ensure that new knowledge is incorporated into actual practice, and make sure its impact is assessed. AHRQ funded 18 networks in FY 2001 through cooperative agreements for infrastructure development and network-defining surveys. All 18 networks will conduct surveys that will provide baseline data on the clinicians enrolled in each network, the services provided, and the characteristics of patients receiving those services.
Many of the networks will also conduct special projects. For example:
- Four of the networks were awarded additional funds to pilot test and evaluate electronic methods of collecting and aggregating practice-derived research data. One of these projects, being conducted within the national network of the American Academy of Family Physicians, will test the use of hand-held computers to improve pneumococcal immunization among adults.
- Two networks were awarded additional funds to assess clinician and patient knowledge and attitudes about protecting the privacy and confidentiality of research data. The network supported by the University of California, San Francisco will, for example, conduct in-depth interviews to learn patient attitudes and perceptions regarding research participation generally, and release of medical record information specifically.
- Two networks were awarded grants that focus on patient safety reporting systems in primary care practice. One of these networks, sponsored by the University of Colorado, will test various patient safety reporting systems in community practices that serve rural, urban, minority, and other underserved populations.
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HIV Research Network
Swift changes in treatment regimens resulting from continuous drug therapies are having a profound effect on resource use by people with HIV infection. Medicaid, Medicare, the Department of Veterans Affairs, and the Ryan White CARE Act spend more than $7 billion each year to treat people with HIV disease. Yet, because change is occurring so quickly, data that were collected as recently as 3 years ago do not reflect the current situation and cannot be used reliably for policy and planning purposes.
In 1999, AHRQ joined with the Department's Assistant Secretary for Policy and Evaluation (ASPE), the Substance Abuse and Mental Health Services Administration (SAMHSA), and the Health Resources and Services Administration (HRSA) to establish a pilot HIV data center at the Johns Hopkins School of Medicine. The goal was to collect current information about a large number of individuals who have HIV disease from providers who specialize in HIV care and build a set of associated, publicly available databases about the characteristics of patients and the care they receive. Although the HIV Research Network produces real-time information about access, costs, and quality of care, its databases will not include any patient or provider identifiers.
In 1999, researchers at the data center tested on a small scale the feasibility of transmitting data from HIV caregivers. These included data on patient characteristics, payer data, clinical data, and data on the number of visits and admissions. In the initial phase of this project, the researchers succeeded in enrolling a set of HIV care providers in different regions of the United States and in establishing procedures for transferring data on HIV-related resource use and relevant clinical parameters to the HIV Research Network. Data on over 10,000 HIV-infected patients for calendar year 1999 were transferred to the HIV Research Network.
In FY 2000, the pilot was deemed successful, NIH's Office of AIDS Research joined the collaboration, and efforts were expanded to collect data from 20 to 30 providers who treat at least 20,000 people with HIV disease. Preliminary data analyses indicate that there are serious disparities among people with HIV disease in their ability to receive expensive new drug therapies. Specifically, analyses show:
- Black women covered by Medicaid are less likely than other patients to receive new and expensive drug therapies.
- White patients are more likely than black or Hispanic patients to receive new therapies.
- Medicaid patients are less likely than privately insured patients to receive new drugs.
In FY 2001, based on the promising results from the pilot project, AHRQ initiated a contract to continue the project through FY 2005.
The HIV Research Network provides an ongoing means to collect timely information on resource use associated with HIV disease. It is a cost-effective way to obtain reasonably complete medical and financial information on a large number of HIV-infected patients, thus facilitating research on HIV care among different types of patients.
Future plans include enrolling several new pediatric sites to examine access to care for children with HIV, as well as the costs and quality of care they receive. In addition, the HIV Research Network plans to conduct interviews with patients at each site to acquire information about their compliance with medication dosages and their access to mental health and substance abuse services.
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User Liaison Program
AHRQ's User Liaison Program (ULP) synthesizes and distributes research findings to local and State policymakers so they can use it to make evidence-based decisions about health care policy. ULP holds small workshops, sponsors audio teleconferences, and distributes other information to provide recent research findings to policymakers on the critical issues confronting them in today's changing health care marketplace. These products are user-driven and user-designed. ULP solicits input from legislators, executive agency staff, and local officials on policy issues where they need information and technical assistance.
In FY 2001, ULP held 18 workshops attended by more than 1,500 health care policymakers representing all States, the District of Columbia, American Samoa, the Virgin Islands, and Guam. Eight of these were national workshops attended by policymakers from around the country, and two workshops were held for specific audiences. In addition, ULP conducted four audio-teleconferences—expanding long-term choices for the elderly, strengthening the health care safety net, the paraprofessional workforce, and health care informatics—that brought training directly to 800 policymakers and other interested parties.
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