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Performance Plans for FY 2000 and 2001 and Performance Report for FY 1999

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Appendix 6. Priority Populations Research Summaries

Children's Health Program

Introduction

The Nation's 75 million children have always been a focus of research and activities supported by AHRQ and its predecessor agencies. They were, however, recognized as one of three priority populations in AHRQ's December 1998 Strategic Plan. Then, in late 1999, Congress and the President recognized children as a priority population as part of AHRQ's reauthorization (P.L. 106-129).

There are substantial reasons why children need special attention as AHRQ goes about fulfilling its legislative mission to "enhance the quality, appropriateness, and effectiveness of health services, and access to such services" (P.L. 106-129). Children differ from most adults in at least four respects: epidemiology of health and health care; rates of developmental change; dependency on adults; and demographics. Optimally, these characteristics of children should be taken into account as changes in health care are studied. Despite the dramatic changes occurring in the organization and financing of children's health services, the knowledge base for guiding these changes or assessing their impact is less well developed than that for adults.

1. Current State: Children's Health Care Needs and AHRQ Contributions

Children's Health Care Needs. Children's health presents a paradox. At the same time that children are among the most healthy and resilient of the nation's populations, they also experience a wide range of health needs that may bring them into contact with providers of personal health care services. Further, their health needs change as they grow from infants to adolescents.

As a group, children 19 and under experience the lowest mortality rates of all ages, yet they have the highest rates of acute (short-term) illnesses, most of which cause them to seek medical care. Although the percentages of children and adults with chronic illnesses may be similar (from 5 to more than 30 percent of children are estimated to have a chronic illness), children's patterns of chronic illness are very different from those of adults. As more infants are born seriously ill or at risk for illness survive because of improvements in technology and the organization of care, the number of chronically ill children who survive into adulthood will increase, presenting new challenges to the health care system. By virtue of their incomplete and varying development throughout most of childhood, children are particularly susceptible to selected social and physical environmental hazards and behavioral risk factors, some of which may be amenable to clinical intervention. Finally, clinical care presents opportunities to prevent the occurrence of disease (e.g., through timely immunization) and, beyond the prevention of specific disorders, to promote children's overall health and well-being.


Leading causes of mortality among children are low birthweight and prematurity, respiratory distress syndrome, unintentional injuries, homicide, cancer, heart disease, and suicide. Highly prevalent acute conditions among children under 18 include infective and parasitic diseases, respiratory conditions, digestive system conditions, acute ear infections, unspecified fever, and, for children 5-17, skin conditions and headache.

The most severe and debilitating illnesses tend to be congenital and rare, that is, a relatively small number of children are born with a condition such as cerebral palsy, spinal bifida, muscular dystrophy, Down syndrome, and sickle cell disease. Many more children experience chronic illnesses such as asthma, attention syndrome, and sickle cell disease. Many more children experience chronic illness, such as asthma, attention deficit hyperactivity disorder, anxiety, and depression.


Taken together, these conditions and opportunities for prevention result in high uses of outpatient personal health services. Hospitalizations, on the other hand, are relatively rare. Some services (e.g., dental care, mental health care) are widely acknowledged to be underutilized, however, and services provided in non-mainstream settings such as schools and some community clinics are undercounted.

Cross-cutting issues in health care for children include many that track cross-cutting issues for adults—racial and ethnic disparities, income-related disparities, differences in need by health state, vulnerability to poor access to care, effects of changes in organization and financing of care, and quality. Children with or at risk of chronic or serious acute disorders may be more vulnerable to problems with coordination of care across multiple settings, providers, and financing streams. Perhaps most importantly, unlike many adults, children must always be considered in the context of the family.

AHRQ Contributions. AHRQ's work on behalf of children's health spans the range of their health care needs. There is a greater body of AHRQ-supported research in high prevalence, high-cost physical conditions than in rarer conditions, mental disorders, developmental disorders and well-child care, or in research that provides knowledge about whether findings can be applied across conditions and children. Recently, AHRQ's portfolio has diversified to include more studies in asthma, mental disorders, injuries, and the organization of care. Research in settings beyond the physician's office and the hospital setting has also increased. AHRQ has made significant contributions to its strategic goal of improving health outcomes for children, including development of outcomes measures that are relevant to children and children's daily functioning, and rigorous research on whether specific health care interventions improve care, and at what cost. Research in outcomes and effectiveness has demonstrated that a number of commonly-used procedures in prenatal care have little evidence to support their effectiveness, and that less costly antibiotics (and sometimes no antibiotics) are in most cases as effective for treating acute ear infections as are more expensive antibiotics.


The Child Health and Illness Profile-Adolescent Edition evaluates children's well-being across 6 domains, providing an excellent population-based measure of functioning that is able to distinguish between children who are generally well and those who are seriously ill. Another tool, the CHRIs, is a computer-based program using lively cartoon figures to ask children about their own health and the quality of their care, and to help them negotiate care with their physician.


AHRQ-supported research on asthma quality, while focused on adults, provided the basis for development of the NCQA asthma quality of care measure for individuals ages 4 and up in managed care plans.

The child version of CAHPS® was adopted by NCQA, the first time a plan-oriented survey measure of the quality of care provided to children had ever been used nationally.


The Evidence-based Practice Center at Oregon Health Sciences University that produced the evidence report on TBI is conducting extensive followup to reduce the among of inappropriate care being delivered, and to encourage research to determine what works for TBI in children. The NIH used a draft of the ADHD treatment report at its consensus development conference on ADHD, and to develop a research agenda to advance the knowledge base on effective treatments.


In 1999, AHRQ published evidence reports on ADHD diagnosis and treatment and on rehabilitation for traumatic brain injury (TBI) in children and adolescents. Evidence reports are forthcoming on treatment of acute otitis media and on otitis media with effusion, acne, on child health aspects of diagnosis and treatment of acute bacterial rhinosinusitis, and on the clinical preventive services of developmental screening, screening for bacterial vaginosis in pregnancy, and newborn hearing screening.

AHRQ has identified problems in the quality of children's health care, developed measurement tools in children's health care, and embarked on major research initiatives designed to provide evidence on how to improve quality of care for children. To address the widely acknowledged paucity of quality measures for children, AHRQ is supporting development, testing, and implementation of the Consumer Assessment of Health Plans (CAHPS®), the Pediatric Quality of Life measure, and other measures. Studies are under way on the impact of varying health plan practices and policies on quality of care for children; and on varying quality improvement interventions for asthma, newborn jaundice, and chlamydia screening in teenagers.

Up to date information on cost, use, and access is critical for policymakers. AHRQ's two primary databases, MEPS and HCUP, are invaluable resources for understanding how, why, and where children use health care. HCUP analyses recently revealed that two of the five most expensive diagnoses for hospitalization were child-related. A mainstay of AHRQ's research on children has been analyses of their insurance coverage, including analyses of disparities, and examinations of the effects of insurance coverage on access, use, and quality of health services.

2. Needs assessment

Numerous stakeholders have advised AHRQ to expand or maintain its portfolio in child health services research and dissemination activities in numerous ways. Of particular note are recommendations to AHRQ that the Agency:

  • Work to promote a broad change in attitude about the importance and value of quality of care for children, at the same time that it continues to fill the pipeline with evidence-based information to form the substance of quality improvement efforts.
  • Put a greater focus on settings beyond mainstream medical care settings in which health care is provided to children, as well as working to enhance needed connections between public health and clinical services.
  • Put a greater focus on special subpopulations of children, particularly racial and ethnic minorities in low-income families, adolescents, children with chronic illnesses and disabilities, and injured children.
  • Broaden the disciplinary base to include more behavioral and social scientists and more nurse researchers.
  • Form partnerships with community-based organizations and advocacy groups for children.
  • Focus on the long-term effects of children's health care.

AHRQ found evidence of an enormous gap between Medicaid eligibility and enrollment in the program. In 1996, 4.7 million children who were eligible for Medicaid were not enrolled. This finding is cited widely in documents on outreach strategies to increase enrollment in Medicaid and the newer State Children's Health Insurance Program (SCHIP).


AHRQ, along with the David and Lucile Packard Foundation and the Health Resources Services Administration, recently funded a set of studies addressing the impact of insurance expansions for low-income children on access and other outcomes. This set of studies was inspired by unanswered questions around SCHIP and six of the studies directly focus on SCHIP programs in Florida, Massachusetts, Kansas, Indiana, Oregon, and New York. Others address access and other issues related to Medicaid managed care and the impact of insurance expansions on safety net providers for children. Several of the studies are looking at the impact of alternative outreach strategies on enrollment and retention for low-income children. Findings from these studies are expected in 2002.


3. Agenda for Fiscal Year 2000 and beyond

In fiscal year 2000, AHRQ will address the directives of the recent congressional reauthorization, suggestions made in Appropriations report, within its continued focus on encouraging and supporting research and activities that have the strongest potential to improve access, outcomes, and quality of health care for children, among other priority populations. Developmental activities will take place to advance the outcomes research and quality improvement agendas. In addition, TRIP II applicants are eligible for up to $1.2 million in funds set aside for high quality research on how to translate research into practice for children with asthma, and current knowledge about quality improvement will be discussed with members of the National Asthma Education and Prevention Program coordinating committee, including representatives from 38 health care professional associations. A ULP meeting will focus on quality improvement in pediatric asthma. Research using MEPS data will address critical issues for SCHIP and Medicaid program such as outreach, enrollment, retention, and the effects of variations in cost-sharing. In addition, enhancements are being made to MEPS and HCUP to enable more sophisticated research on quality in health care for children. A chartbook on hospital care for children that uses HCUP data will provide critical information for providers, policymakers and researchers.

In fiscal year 2001, ongoing efforts to understand the effectiveness of strategies to translate research into practice for children will bear fruit, permitting stakeholders to turn productive strategies into practice and policy tools, and researchers to build further on these findings, addressing the questions that inevitably will remain unanswered. In addition, children will be included in efforts to improve information technology and reduce errors in health care.

Achieving AHRQ's vision for improving children's health care will require a long-term agenda informed by an overall framework and willing to build over time on incremental advances. In the future, children's issues are likely to be included in more broad-scope research projects as well as addressed in specific studies, all undertaken by a increasingly diverse group of well-trained researchers with easy access to the most sophisticated research implements. With effort, understanding and inspiration, the timeliness and usefulness of their research findings and the tools they develop with AHRQ's and others support should increase dramatically. AHRQ's agenda for the future aims toward achieving these objectives.

Minority Health Program

AHRQ's investments in minority health services research have resulted in numerous findings which are helping to shed light on how disease processes manifest in minority populations, illuminate the disparities experienced by racial and ethnic minority populations, and contribute to understanding the reasons for those disparities. As the knowledge base regarding healthcare delivery to minority populations expands, AHRQ increasingly is planning to shift its research direction to supporting projects which not only identify, but also pilot ways to eliminate disparities. Projects funded over the past several years have produced a range of findings consistent with AHRQ's three strategic goals: support improvements in health outcomes, strengthen quality measurement and improvement, and identify strategies to improve access, foster appropriate use, and reduce unnecessary expenditures. Some examples of the research findings follow.

Goal 1: Support Improvements in Health Outcomes

AHRQ supports research to improve treatment outcomes and reduce health care costs for many of the country's most prevalent and costly diseases and conditions. Much of this research for minority populations has focused on descriptive information regarding outcomes. For example, one previously funded research project in this area described differences in outcomes between black patients and white patients being treated for asthma or diabetes, noting that the differences remained after adjusting for socioeconomic status. The project also found that interventions which were successful for white patients were not always transferable to black patients. This type of information is important to designing strategies specific to minority populations in order to improve healthcare outcomes. Another descriptive study described a positive association between receipt of social support and improved outcomes in black patients with diabetes.

In addition to descriptive projects, other studies investigate means to improve outcomes. One example is a project which piloted an intervention to increase the appropriate use of corticosteroids in pregnant women prior to delivery of preterm infants. Minority women are at increased risk for premature deliveries due to a number of factors. This intervention, which has been shown to reduce infant mortality and disability, was successful in improving the quality of care and resulted in a substantial increase in the use of steroids.

Ongoing research continues work to improve healthcare outcomes in minority populations. Grants funded in Fiscal Year 1999 address a range of issues:

  • One project will attempt to determine whether race and gender influence the rate of performance of selected cardiac tests and procedures.
  • A grant focusing on asthma care will study the cost-effectiveness of clinical practice guidelines designed to reduce asthma morbidity in children. If effective, implementation of these interventions could have significant impact on the lives of an increasing number of children with asthma, many of whom are minority.
  • Another project will develop methods for risk adjustment for surgical procedures which are performed in otherwise healthy populations, using hysterectomy, an operation performed at very high rates in African-American women who also have higher complication rates compared with other women. One result of the study will be comparisons of performance of different providers based on outcome.

Improvement in healthcare outcomes for minority populations is critical to assuring that the benefits of the Nation's healthcare system are shared equally by all citizens.

Goal 2: Strengthen Quality Measurement and Improvement

Research grants in this area aid in developing valid and consistent quality measures and sound improvement strategies that work in everyday medical care. Here also, some of the research regarding minority populations has been descriptive and contributes to a general knowledge base regarding differences. One study, for example, found that black patients and female patients with chest pain were 60 percent as likely to be referred for cardiac catheterization as white male patients. Another project conducted at a major metropolitan hospital which had a predominantly minority patient population determined that medical residents on the staff did not follow several recommended guidelines for diabetes care. Other projects have enhanced the ability to measure quality in different minority populations. One example is a project which translated into Chinese, and validated the translation of a health status instrument (SF-36) used to assess various dimensions of health. For another project, the Consumer Assessment of Health Plans Study (CAHPS®) survey questionnaire was translated into Spanish in order to assist Hispanic Americans with their selection of health plans.

Ongoing research in this area will benefit minority populations by assuring the delivery of quality healthcare. Several grants funded in Fiscal Year 1999 aim to improve quality measurement:

  • One project is developing child health status instruments that comprehensively measure the health and illness profile of children aged 5 to 11. The instruments that result from this project will find widespread use in assessments of child health from parents and/or children's perspectives, and will enable examination of changes in child health over time, as well as evaluations of the effects of health care on children. By virtue of its geographic location, this project will target minority children.
  • Quality of care for Asian-Americans is the aim of one study which will conduct separate focus groups for Chinese and Vietnamese patients to identify important patient issues, develop, and then validate patient questionnaires. The primary products of this study will be new ways to evaluate quality of care for Chinese and Vietnamese populations at risk because of language, cultural, and other barriers.
  • The purpose of another project is to develop and evaluate a model for Collaborative Quality Improvement in loosely structured managed care organizations (MCOs). The specific condition selected for intervention (neonatal jaundice) is one of particular significance in minority racial/ethnic populations as incidence is especially high among certain minority groups.
  • Another project will compare different support systems to help primary care providers better manage urban African Americans with non-insulin dependent diabetes mellitus.

These and similar projects which enhance the ability to measure accurately the quality of care received by minority patients will help to improve healthcare quality and eliminate health disparities.

Goal 3: Identify Strategies To Improve Access, Foster Appropriate Use, and Reduce Unnecessary Expenditures

Research projects under this goal investigate a wide range of issues related to costs, utilization, insurance coverage, and access, in order to understand better the current trends in healthcare. Previously funded projects document differences in access, use, and cost of healthcare for minority populations compared to the general population. For example, one project investigating use of dental care found that American Indians with a usual source of dental care were twice as likely to report a dental visit as those who had no usual source of care. Findings from another project, a national study of HIV/AIDS care, indicated that there was no difference for Hispanic patients on most indicators used to determine adequacy of care. However, the same study found that black patients were started on a "cocktail" of medicines used to treat HIV/AIDS an average of 3 months later than white patients. Although black patients continued to lag white patients in several quality-of-care measures, the study noted that by early 1998, the disparity for black patients in initiating use of newly developed HIV medications had decreased from 24 percent to 8 percent.

One major source of research findings is AHRQ's Medical Expenditure Panel Survey (MEPS), a nationally representative survey that collects detailed information on the health status, health services use and costs, and health insurance coverage of individuals and families in the United States, including nursing home residents. Analyses of data from MEPS resulted in publication in Fiscal Year 1999 of findings that use of ambulatory care and dental care was lower among blacks and Hispanics that among other patients, and that Hispanics tend to spend less on health care compared to blacks and whites. Comparisons with earlier data revealed that decreases in health insurance coverage explained one-fifth of the declines in access to health care for Hispanic Americans (age 18-24) between 1977 and 1996.

Since MEPS is an ongoing survey, additional findings can be expected to continue to shed light on access, use, and cost of healthcare by minority populations.

Additional grants funded in Fiscal Year 1999 also address these issues:

  • One study will evaluate how organizational and financial arrangements in Medicare managed care and fee-for-service settings affect the use and content of primary and referral care for patients with diabetes. This study should deepen the understanding of the role of financial and organizational arrangements on access to and quality of care provided to Medicare beneficiaries with diabetes.
  • Another project is aimed at creating awareness among health professionals and institutions of the differences in the written communication needs of language minority populations. The goal of this research is to compare translated and non-translated text (developed originally in Spanish) brochures currently distributed to Spanish-speaking adults in southern Arizona and northern Mexico. The project should also lead to the development of guidelines for workers/organizations in preparing effective written health-related materials in Spanish.
  • One grant will investigate cultural competence in hospital systems. The project will facilitate understanding how the Massachusetts acute care hospital industry is undertaking structural and process improvements to ensure quality, access, and effectiveness of health care for racial/ethnic minority consumer groups.
  • An additional study will investigate the effectiveness of patient interventions designed to increase appointment scheduling for breast and cervical cancer screening in low income women aged 18-64 and to test the interaction of the interventions with ethnicity-race.

In Fiscal Year 1999, AHRQ expanded its support for minority health services research by announcing funding set-asides for projects addressing conditions identified in the HHS Initiative to Eliminate Racial and Ethnic Health Disparities. The series of Requests for Applications (RFAs) responded to the report, "Quality First: Better Health Care for All Americans," by The President's Commission on Consumer Protection and Quality in the Health Care Industry, which called for a significant investment in the further development of research, tools, and information. The three RFAs were: 1) Measures of Quality of Care for Vulnerable Populations; 2) Translating Research into Practice; and 3) Assessment of Quality Improvement Strategies in Health Care. In addition to their common context and theme, these three initiatives were also designed to help build capacity in the field of health services research.

The RFA, "Measures of Quality of Care for Vulnerable Populations," sought to develop and test new quality measures for use in the purchase or improvement of health care services for populations identified as vulnerable in the Presidential Commission report. The set-aside funds were used to support four grants: One project will develop a quality of care measure for hypertension in a population of Hmong refugees in Fresno, California, and conduct a pilot test of the instrument. A second project will use census data to monitor care in vulnerable populations and develop a series of practical, clinically relevant indicators that are sensitive to differences in quality of care provided to socioeconomically vulnerable populations, evaluate the performance of census-based data, and determine the extent to which socioeconomic measures account for disparities in the quality of care provided to African-American and Hispanic patients. In another project, "Measuring the Quality of Care for High Risk Infants," investigators will develop new methods to measure the quality of care for very low birth weight infants, apply these methods to the estimation of past quality of care and the prediction of future quality of care, and identify and apply a minimum set of quality measures that summarizes quality differences. The fourth project will use Medicaid data to develop claims-based quality measures for ambulatory diabetes care, identify appropriate indicators of quality of care, analyze variation in receipt of specified indicator care components, and develop a quality-monitoring system.

The RFA, "Translating Research into Practice," intended to generate new knowledge about approaches (both innovative and established) that are effective and cost-effective in promoting the use of rigorously derived evidence in clinical settings and lead to improved health care practice and sustained practitioner behavior change. Three grants were funded using the set-aside funds: One grant to improve diabetes care will focus on vulnerable patients with diabetes who receive care at rural and urban community health centers (CHCs). CHCs are critical sites of primary care for 10 million Americans, many of whom are minority, who reside in medically underserved areas. A project to improve home health care nurses' performance and promote adherence to evidence-based guidelines will focus on two tracer conditions where women and minority patients are overrepresented: congestive heart failure and cancer pain. The third grant proposes to standardize the current variability in surfactant administration practices for the prevention and treatment of neonatal respiratory distress syndrome to reduce both mortality and morbidity for pre-term infants.

For the RFA "Assessment of Quality Improvement Strategies in Health Care," AHRQ solicited grants for projects to rigorously evaluate strategies for improving health care quality which are currently in widespread use by organized quality improvement systems (projects that would expand the conceptual and methodological basis for improving clinical quality and analyze the relative utility and costs of various approaches to quality improvement). The project funded through set-aside funds of this RFA will create a partnership with Harlem's six major health providers to evaluate the effectiveness of nurse management compared to "usual care" for congestive heart failure patients in East and Central Harlem.

In addition to directing funding to support minority health services research, AHRQ convened an expert workshop in May 1999, entitled "Future Directions for Health Services Research Regarding Minority Populations." Clinicians, health services researchers, and community leaders convened to discuss the Agency's future research agenda. In the course of the day, the meeting participants met in large and small groups and identified appropriate priorities and questions for health services research, strategies for involving communities of color, and building the capacity in minority health services research. Some suggestions from the meeting included increasing research devoted to evaluating the importance of cultural competence to health care disparities; empowering communities to become involved in health services research; requiring strong linkages to minority communities as a condition for receipt of research project funding regarding minority health services research; building capacity for minority institutions and minority investigators to become more involved in health services research; and incorporating research on minority health services and needs into other research efforts.

For Fiscal Year 2000, AHRQ has expanded further its commitment to minority health services research through two new RFAs. The first RFA, "Understanding and Eliminating Minority Health Disparities," will help determine what we need to know to improve care further by supporting the development of centers of excellence doing research on minority populations. The centers will assure that we gain new knowledge about the factors that affect the quality, outcomes, cost, and access to care for minority populations. This RFA responds to the HHS Initiative to Eliminate Racial and Ethnic Health Disparities. For the second RFA, "Translating Research Into Practice," half of the funding will be reserved to support applications which translate research findings to improve the quality of care for minority populations. These projects will help close the gap between what we know and what we do, by exploring reasons for the disparities and ways to eliminate them. A priority will be determining to what extent general strategies need to be modified to improve care for minority populations.

These and other AHRQ minority health services research activities will go beyond mere support of increases in existing knowledge to include the design of systematic interventions to determine which approaches are most effective for delivering healthcare to minority populations. AHRQ research funded in support of the HHS Initiative to Eliminate Racial and Ethnic Health Disparities will provide a firm basis for assuring equitable healthcare for all citizens.

Women's Health Program

Introduction

Increased interest in women's health over the past decade was fueled by a recognition that women had been historically under-represented in biomedical research, which resulted in policies mandating the inclusion of women and minorities in federally-funded studies. At the same time, a number of developments in the health care delivery system converged to establish a new focus on the use of health services associated with patient gender. Women began to press their legislators for an enhanced focus on women's health concerns in provision of selected services and for biomedical research, the health system developed the capacity to examine patterns of health service use on a large scale, and there was a professional evolution in health care that recognized the importance of patients' preferences in clinical decisionmaking. The central role of women in making family health care decisions was recognized.

A critical challenge for AHRQ in Fiscal Year 1999 was to obtain input from a broad community of researchers, clinicians, policymakers, women and advocates to identify priorities for women's health services research. Thus, in addition to funding studies relevant to problems unique to women such as breast cancer, and studies that examine differences in patterns of care associated with gender, the Agency undertook a major initiative to work with stakeholders to develop a user-driven research agenda to inform future research directions.

During the year, the Agency also received a number of requests from advocates in the private sector working on domestic violence, and from the HHS Steering Committee on Violence Against Women, for assistance in developing a research-based performance standard for health care providers. In response to these specific requests, the Agency also initiated a series of consultations and review of the literature related to health care interventions in use around the country.


There are many opportunities. The challenge is not what AHRQ could do, but rather how to integrate it together coherently in a way that explains to Congress and the public why the Agency has taken on this particular agenda.

—Expert Panelist, "Defining a Women's Health Services Research Agenda," September 24, 1999


Needs Assessment and Agenda Development

The major products for the women's crosscut program in Fiscal Year 1999 include a user-driven research agenda oriented to AHRQ's strategic goals, and a targeted research initiative on the health care system's response to domestic violence. In addition to consultation with a range of individuals and groups working on women's health issues the agency convened two expert meetings to assist in testing issues and priorities identified.

What is the impact of health system change and health policy change on women? A major issue area identified is the need for assessment of the quality of care in Federal health plans that serve large populations of women. Little is known about how well low-income women are being served by Medicaid from their perspective, whether welfare reforms are impacting on the health of low income families, and what the impact on women and caregivers is of revised Medicare policies on home health care, nursing home, and other areas of change.

Many in the stakeholder community flag the need for a substantial expansion of sex-specific analysis in research and AHRQ leadership in encouraging adherence to existing mandates requiring the inclusion of women. Although AHRQ and other federal health agencies require studies to include women, women are still not consistently included in sufficient numbers to make possible analysis of male-female differences nor comparisons between groups of women by age, race, or other characteristics. Even when adequate numbers of women are included, sex-specific analyses are not routinely reported.


The urgency and magnitude of the problem of family violence have caused policymakers, service providers, and advocates to take action in the absence of scientific knowledge that could inform policy and practice.

—Violence in Families: Assessing Prevention and Treatment Programs, IOM, National Academy Press, 1998


There is a need to move from identification of variations in practice to the study of how to improve outcomes and effectiveness. Research on improving active life expectancy among older women is a high priority for almost all stakeholder groups. As the number of older women affected by multiple chronic conditions continues to accelerate, there is a need to press forward with greater urgency and additional resources to identify improved medical management models that will maximize patient functioning and quality of life while minimizing costs. Bringing about improvements will require studies that link an understanding of financial and organizational incentives with knowledge of clinical effectiveness.

There are a only few studies identifying major male-female differences in the effect of therapeutic drugs and the research findings have received little attention in the practitioner community. Studies are need on the extent to which women experience adverse events from certain drugs or classes of drugs, and the extent to which sex-based differences are a factor. Studies which focus on improved uptake of findings on gender differences in effects are needed. A related concern is the lack of rigorous assessments of new technologies in imaging, ultrasound, and other areas of technical innovation and progress.

Strategies to address disparities in outcomes associated with gender and race/ethnicity continue to need attention and resources. Studies of how to improve cultural competence are key to improving access and outcomes among ethnic groups of women, including immigrants.


There is a need to examine the impact of compliance or noncompliance with the Americans with Disability Act and its effect on access. Many disabled women do not get care because they can't get in the front door of the doctor's office. Pelvic exams are bypassed because it is too much trouble to get the women on the exam table. And, many disabled women have their neurologist or orthopedist serve as their primary care doctor because primary care doctors are neither trained nor comfortable in serving their needs.

—Participant in Expert Panel, September 24, 1999


Because of changes in access to services and types of providers in integrated health care systems, new studies of the mental health services used by women are needed. Data on women's use of mental health services, what mental health services are used by women from different cultural groups use or don't use and what happens to them in the mental health system are all needed.

Cost, Use and Access Issues Related to Women's Health. Women have a strong stake in additional study of gender differences in types of care provided. Studies suggest that while women see their primary doctor more often, they have lower use of specialists than do men and are less likely to receive hospital based procedures such as coronary artery bypass graft surgery, heart transplantation, automatic cardioverter-defibrillator implants, angioplasty, pacemakers, and hip replacement surgery. Whether this represents underuse, technical barriers that need to be addressed, or appropriate care for women needs to be established.


Women interact with the health care system in unique ways and use more health care services than men, as well as requiring different types of services. Women comprise 52 percent of the population over age 18, but make up about 60 percent of visits to offices and outpatient departments in hospitals.


The care received by women tends to be more fragmented than care received by men as a result from the distinctive scope of practice of physician speciality groups. Almost one-third of women in the United States had both a family physician or internists and an obstetrician/gynecologist. A recent Commonwealth Fund study found that women who see both types of providers received more preventive services than women with only one generalist physician, but also incurred 25 percent more annual visits. However, women who did not see an obstetrician/gynecologist were less likely to receive key preventive services. To date, little is known about the impact of such changes in the structure of health plan benefits as introduction of primary care gatekeepers, cost-sharing, referral requirements, and the like, on the type, quantity, and quality of care women receive.

Ongoing study of the use of service, insurance status, and study of the impact on the health of women who are uninsured—including more than one-third of all Hispanic women—is critical.

Future Directions

As a result of work in the area of domestic violence and review of the literature, AHRQ is preparing to issue a call for longitudinal studies of the effectiveness of health care interventions for victims of domestic violence. The dialogue with the advocacy community around the need for science to inform practice if health care systems are to develop more aggressive treatment programs has resulted development of a first national conference on the domestic violence and health care, to be held in October 2000. The Agency is also working on development of a program announcement targeted specifically to women's health in Fiscal Year 2000 to encourage new research targeted to identified priorities.

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