Chapter 4. Areas of Special Interest

Research on Bioterrorism

As demonstrated by the attacks of September 11, 2001, and the subsequent use of anthrax as a biological weapon, bioterrorism represents a significant public health threat to the United States. To address this threat, the capacity of Federal, State, and local entities to respond to potential bioterrorism events must be developed. To be as effective as possible, these efforts must be directed toward improving the ability of both our public health system and our health care delivery system—including the individual systems of care, facilities, and clinicians—to detect and respond promptly to such events. They also must focus on ensuring that these entities can work together on short notice and with other related systems, such as emergency preparedness and law enforcement, as effectively and efficiently as possible.

AHRQ's bioterrorism initiative, which started in 2000 before the attacks, is a critical component of the larger U.S. Department of Health and Human Services initiative to develop public health programs to combat bioterrorism. The agency recognizes the need for a strong health infrastructure to coordinate, prepare for, and respond to acts of terrorism. To inform and assist primary care doctors and practices, community health centers, managed care organizations, emergency departments, and hospitals in meeting the health care needs of the U.S. population in the face of bioterrorist threats, AHRQ-supported research focuses on the following:

• Emergency preparedness of hospitals and health care systems for bioterrorism and other rare public health events.
• Technologies and methods to improve the links between the personal health care system, emergency response networks, and public health agencies.
• Training and information to prepare community clinicians to recognize the manifestations of bioterrorist agents and manage patients appropriately.

AHRQ's bioterrorism research is a natural outgrowth of the agency's ongoing efforts to develop evidence-based information to improve the quality of health care in the United States. Examples of products and tools that are currently available include the following:

• Web-based training modules to teach health professionals how to address various biological agents. Separate modules exist for emergency room doctors, radiologists, pathologists, nurses, and infection control specialists. Clinicians can obtain continuing medical education (CME) credit at www.bioterrorism.uab.edu.
• A Real-Time Outbreak and Disease Surveillance (RODS) System for bioterrorist 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.
• Use of 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.
• A new online survey that hospitals can use to assess their capacity to handle potential victims of bioterrorism attacks or for evaluating existing emergency plans. The survey covers subjects such as biological weapons training for personnel, procedures to permit rapid recognition of credentialed staff from other facilities, on-call nursing policies, and designated areas of emergency overflow for patients.

In FY 2003, AHRQ received nearly $9 million, both in appropriated funds and funds from other agencies, to help continue the Agency's efforts to support national preparedness for a bioterrorist event. Approximately $5 million was committed to support research grants that examine and promote health care systems' readiness for a bioterrorist event through the development of new evidence, tools, and models.

In addition to the bioterrorism efforts described in the "Fast-Track Research Through Integrated Systems" section of this document (Chapter 3), the following AHRQ projects have culminated in some major accomplishments that contribute to the Department's strategic goal to enhance the ability of the Nation's health care system to effectively respond to bioterrorism and other public health challenges.

• An AHRQ-sponsored Web conference designed to address the issues and activities related to preparing our Nation to respond to the potential threat of a smallpox outbreak was conducted via the World Wide Web and telephone. A bioterrorist attack using smallpox would pose a significant threat to public health in the United States. The reintroduction of the smallpox virus—which has not infected anyone in the world for nearly three decades—into an unprotected population could cause substantial morbidity and mortality and overwhelm public health resources. While the threat of such an attack is of national concern, it is at the local level that public health officials and health system planners must be ready to respond.
• A Web-based data tool and manual was developed, the Abt-Geisinger Resource Inventory for Preparedness (AGRIP), that facilitates the health care system's ability to monitor and track resources that would be needed to respond to a bioterrorist event. This work features rural hospitals as a model and is being incorporated into the Health Resources and Services Administration's Bioterrorism Hospital Preparedness Program guidance as a resource for State and local grantees.
• An evidence report was published, Evaluation of Hospital Disaster Drills: A Module-Based Approach, that presents an overview of current knowledge on how disaster drills and training are conducted and evaluated for bioterrorism preparedness. The report includes a tool for evaluating disaster drills and training. The report and tool are being disseminated to States and other interested groups via the AHRQ publications clearinghouse, regional meetings with grantees of other HHS agencies, and through the HRSA Bioterrorism Hospital Preparedness Program guidance as a resource.
• An evidence report was published, Regionalization of Bioterrorism Preparedness and Response, that provides an overview of potential relevant regional models for the delivery of medical and non-medical services in the event of a bioterrorist attack, including a framework for identifying the key decisions made by clinicians, public health officials, and others during a bioterrorism response and the information systems that enable regionalization of services. This report has been disseminated to States and other interested groups through the AHRQ clearinghouse, regional meetings with HRSA/CDC grantees, and integrated into the HRSA Bioterrorism Hospital Preparedness Program guidance as a resource on regional planning.
• Three regional meetings were held for HRSA/CDC and other Federal agency and departmental representatives to disseminate final reports, tools and models. More than 100 participants attended each of these meetings.
• AHRQ held a series of five free Web-assisted audio conferences in 2003 to assist State and local health systems decisionmakers in their efforts to promote health systems preparedness. The important up-to-date information—which was drawn from health services research and the promising practices of States, communities, and health systems from across the country—was shared with more than 2,000 participants.

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HIV/AIDS in the United States

More than 20 million people have died worldwide in the last 20 years of human immunodeficiency virus and its complications. In the United States, the impact of and response to HIV and AIDS (acquired immunodeficiency syndrome) have been widespread. For example:

• An estimated 850,000 to 950,000 people in the United States are living with HIV infection, and one-quarter of those who are infected are not aware of it.
• Each year, about 40,000 new HIV infections occur in the United States. About 70 percent of these new infections are among men, and 30 percent are among women. About half of those who are newly infected are younger than age 25.
• AIDS is currently the fifth leading cause of death in the United States among people aged 25 to 44. As of December 31, 2001, nearly 470,000 deaths among people with AIDS had been reported to the Centers for Disease Control and Prevention.

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AHRQ's HIV/AIDS Research Agenda

AHRQ conducts and supports research on a variety of HIV/AIDS-related topics, including the effects of HIV infection on various population groups, outcomes of treatment with antiretroviral therapy, quality of life for HIV-infected individuals and their families, the costs and financing of care for HIV/AIDS, and access to and use of care.

HIV Research Network

In addition to support for research studies, AHRQ collaborates with other HHS agencies—including the Substance Abuse and Mental Health Services Administration, the Health Resources and Services Administration, and the Office of AIDS Research at the National Institutes of Health—to support the HIV Research Network (HIVRN). HIVRN is a network of HIV providers who pool data and collaborate on research to provide policymakers, researchers, and others with timely information about access to care and the costs, quality, and safety of HIV care, and to share information and best practices among Network participants.

The HIVRN currently includes 18 medical practices located across the Nation that treat more than 14,000 patients. Clinicians, policymakers, and patients need to know about the latest treatments, who is receiving treatment, where they are receiving it, and how care is being financed. The goal of the HIVRN is to disseminate this information widely using the most recent data that are available.

Recent findings from AHRQ-supported research on HIV/AIDS include: Generalist physicians who are experienced in HIV/AIDS care can provide care comparable to that provided by HIV/AIDS specialists. For this study, researchers analyzed data on 1,820 patients and 374 primary care physicians enrolled in the HIV Cost and Services Utilization Study (HCSUS), a nationally representative survey of patients receiving care for HIV and their physicians. Among people with HIV/AIDS, whites are much more likely than blacks to use medication to treat psychological problems, according to a survey of nearly 1,490 HIV-infected patients receiving medical care in the United States. The patients completed an interview form and questionnaire on psychotropic medications used during the previous 6 months. Most of the patients had previously screened positive for depression or anxiety disorder. HIV-infected patients consistently report more problems with hospital care than outpatient care. Most of the problems involve ineffective provider-patient communication. For example, 39 percent of patients complained that their hospital clinicians communicated different things to them, and 28 percent said their pain was not dealt with promptly. Overall, 1,704 patients provided ratings of inpatient care, 2,204 reported on outpatient care, and 818 patients reported on both inpatient and outpatient care.

HIVnet

Health officials and others can access HIV data online through AHRQ's, which draws from HIVRN data. This interactive service, which was launched in 2002, provides statistical answers in real time to questions about HIV patients' use of outpatient care in 2000 by age, sex, race/ethnicity, HIV risk group, use of highly active antiretroviral therapy (HAART), and other variables.

To ensure that the identities of patients and providers remain confidential, HIVnet does not contain any information that can be used to identify individual patients or providers, nor does it contain information on specific regions of the country. HIVnet can be found at http://www.ahrq.gov/data/HIVnet.htm.

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Promoting Evidence-Based State and Local Health Policymaking

Outreach to State and Local Health Officials

AHRQ's User Liaison Program (ULP) synthesizes and distributes research findings to local and State policymakers for their use in making evidence-based decisions about health care policy. ULP holds regional and local workshops, sponsors telephone and Web-supported audio conferences, and distributes other information to provide recent research findings to policymakers on critical issues in today's changing health care marketplace. Topics are chosen with input from legislators, executive agency staff, and local officials.

In addition to providing information and tools to make informed health policy decisions, the ULP serves as a bridge between State and local health policymakers and the health services research community by bringing back to the Agency the research questions being asked by key policymakers. ULP workshops are user-driven, user-designed, and highly interactive, with an emphasis on information sharing between participants and presenters.

In FY 2003, ULP held 17 different activities: 8 national workshops, 5 State-based workshops, and 4 series of Web conferences. In all, more than 6,800 health care policymakers took part in these activities, representing all 50 States, the District of Columbia, the territories, and other countries. These activities covered a wide variety of issues such as bioterrorism, patient safety, racial/ethnic health disparities, long-term care, and rising health care costs.

AHRQ often receives feedback from workshop and audioconference participants on how they used the information shared at these events. Some examples of feedback include:

• ULP cosponsored a meeting with New Jersey State officials on improving patient safety. Information obtained at that meeting was incorporated into a 2004 law requiring medical error reporting to State regulators as well as an analysis by hospitals as to how and why serious mistakes occur.
• As a direct result of a State-specific workshop on using evidence in policymaking that was presented for Texas legislators, their staff, and the Texas Health and Human Services Commission, the Commission used the principles presented to develop performance measures for quality improvement projects in their Medicaid/SCHIP Division. In addition, the Commission will provide training for all staff in the Division in evidence-based policymaking. They are also implementing a telemedicine pilot program that will adhere to standards of evidence, based on workshop principles, in constructing the program evaluation.
• As a result of a ULP meeting cosponsored with Washington State on patient safety, the Washington Patient Safety Coalition was formally launched. Using the products of the conference work groups, the coalition has continued to work on a number of the issues over the past 2 years. The coalition developed a project on surgical site verification initiated at the ULP meeting, which has as its goal the elimination of wrong-site surgery in Washington by 2005. In support of this goal, the coalition held a conference on surgical site infections, and to date, a number of hospitals across the State have created agreements to implement joint policies on wrong-site surgeries. The coalition continues to offer conferences and workshops including a State-wide conference in the fall of 2003 and a conference on health information technology in the spring of 2004.
• A Tennessee executive agency official used information shared at a ULP patient safety meeting to establish a task force of individuals to address architectural safety, fire safety, and infection control in licensed health care buildings. The task force—which is made up of hospital engineers, industry representatives of architects and engineers, and State surveyors and engineers—has held three meetings and will be making recommendations to the board that has oversight responsibilities for all health care facilities in the State.
• An Indiana executive agency official used information shared at a ULP meeting on caring for the chronically ill to solidify the State's thinking on a Medicaid plan to implement a coordinated care management program. The program, which works with a nurse care manager to develop a treatment plan for special targeted services to enrollees with diabetes, chronic heart failure, and asthma, was subsequently approved by CMS.
• Information shared at a ULP Health Care Summit for the Florida legislature helped a number of initiatives move forward. The meeting was the impetus for much needed conversation between the legislature and Florida's Agency for Health Care Administration regarding Medicaid reform.
  • Since the Summit, the State has been developing a complete Medicaid reform proposal and will seek a Federal wavier later this year to place the entire program under the wavier. In addition to concerns regarding growing Medicaid expenditures, the State also addressed drug formulary issues through the banning of the "Value-Added Program," with conservative estimates of saving more than $63 million in prescription drug costs.
  • The 2003 Health Care Summit reviewed the effect of the increase in health care spending through the discussion of "Health Care Cost Pressures and Financing Fundamentals." As a result, the "Select Committee on Affordable Health Care for Floridians" was created in August 2003. Subsequently, the "2004 Affordable Health Care Act" was passed, which addresses many of the complex issues contributing to the increase in cost for health care services.
  • The 2004 legislature passed a law establishing a new licensed health care provider, the anesthesiology assistant, to help address a growing shortage in the health care workforce. During legislative deliberations about this law, members often cited statistics and information that was presented at the 2003 Health Care Summit on workforce and scope of practice issues.
  • After a ULP Web conference on bioterrorism preparedness, an interim study was initiated on hospital surge capacity within and across Florida's seven Regional Domestic Security Task Forces.

To enhance the speed with which research results are used in health care practices and policy, AHRQ's User Liaison Program plans to shift its focus from dissemination to a more active process aimed at having practitioners, purchasers, and policymakers use knowledge from research findings when making practice and policy decisions. AHRQ has a long-standing interest in knowledge transfer, which is the processes by which knowledge and expertise are transferred between researcher and user communities to facilitate the use of research findings by decisionmakers for health care improvement.

Specifically, AHRQ's User Liaison Research Translation program has the following goals:

• Target a broader audience such as hospital and other health system administrators, providers working in those systems, and purchasers, in addition to State and local health policymakers.
• Work with others in the Agency to develop longer term strategies to better assist target audiences in incorporating new knowledge into their policy and practice decisions. These strategies will be based on an intersection of Agency priorities and user needs. Such activities may include Web conferences, national workshops, issue briefs, self study modules, learning networks (groups of users, researchers and content experts who regularly convene to share a common interest in improving the delivery of care around a certain health care topic, such as patient safety), and individualized assistance.
• Build strategies for accelerating the use of research findings instead of conducting one-time events.

Research Translation for Health Care Policymaking

AHRQ's research translation team produces research syntheses targeted to AHRQ stakeholders—the Research in Action series. The purpose of these syntheses is to share research findings and the impact the findings have had so that other stakeholders can learn from our experiences and related research from the field. The subject areas of the syntheses are grouped into six categories: cost, dental, disease-related, elderly, pharmaceuticals, and quality of care. AHRQ has produced 12 research syntheses through FY 2003.

A summary of the research syntheses published in FY 2003:

• AHRQ Tools and Resources for Better Health Care. This report describes the tools and resources that AHRQ makes available to health care policymakers, administrators, employers and other purchasers of health insurance, clinicians, and consumers. These include data resources and tools such as the Medical Expenditure Panel Survey (MEPS), the Healthcare Cost and Utilization Project (HCUP), HIVnet, CAHPS®, the Hospital Bioterrorism Preparedness Tool, and Put Prevention into Practice (PPIP). Online resources available from AHRQ include the National Guideline Clearinghouse®, the Child Health Toolbox™, and AHRQ's Quality Indicators.
• AHRQ Tools for Managed Care. Managed care organizations (MCOs) are responsible for ensuring that individuals enrolled in their plans receive quality health care, and MCOs must satisfy State and Federal requirements to meet certain quality standards. Therefore, MCOs need a reliable source for the most current and scientifically sound tools. AHRQ has funded research to compile a database of evidence-based clinical guidelines and to develop clinical performance measures, member satisfaction surveys, and preventive care recommendations. This synthesis describes the tools and how they have been used, and it provides information on where to learn more about these resources.
• Advance Care Planning: Preferences for Care at the End of Life. The aging of the population has given new importance to the need for end-of-life discussions and advance directives. Although research funded by AHRQ indicates that advance directives are underused, it also shows that most patients are willing to discuss end-of-life options with their doctors. Research also shows that while such discussions are usually reserved for the terminally ill, advance care planning is also a good idea for people suffering from chronic illnesses. Findings from AHRQ-funded studies show that fewer than half of severely or terminally ill patients have an advance directive in their medical records. Only 12 percent of patients who have advance directives had help from physicians in developing them. Between 65 and 76 percent of physicians were unaware of the existence of an advance directive. This synthesis illustrates and quantifies gaps in communication between patients at the end of life and their health care providers and discusses the need to reduce these gaps in communication.
• Dental Care: Improving Access and Quality. This synthesis highlights dental care research sponsored by AHRQ that looks at the impact of a wide variety of factors including reimbursement, race, income, and age on access to and use of dental care. Research suggests that educating families about how to enroll in and access the Medicaid system, streamlining Medicaid administrative procedures, and adjusting provider reimbursement could facilitate broader access to dental care. Studies show that specific treatments such as dental sealants for children may have a positive impact on both health outcomes and costs. Also, the quality of dental care can be further improved by developing and using performance measures for specific treatments. Finally, the production of evidence reports evaluating research on various aspects of care helps to advance evidence-based dental practice and thereby improve the quality of care.

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National Reports on Healthcare Quality and Disparities

During FY 2003, AHRQ completed work on the inaugural editions of two congressionally mandated annual reports: the National Healthcare Quality Report and the National Healthcare Disparities Report. The two reports were released in late 2003. They represent the first national comprehensive effort to measure the quality of health care in America and differences in access to health care services for priority populations.

The reports provide baseline information on quality and differences in access to and use of services for seven clinical conditions:

• Cancer.
• Diabetes.
• End-stage renal disease.
• Heart disease.
• HIV and AIDS.
• Mental health.
• Respiratory disease.

The reports also present data on:

• Maternal and child health.
• Nursing home and home health care.
• Patient safety.

National Healthcare Quality Report

The National Healthcare Quality Report offers hopeful signs in several areas. For example:

• The majority of women are screened for breast cancer (70 percent of women over 40 within the previous 2 years) and cervical cancer (81 percent of women 18 and older within the previous 3 years).
• Most people have their blood pressure and cholesterol levels checked to help prevent or control heart disease, and 85 percent of people experiencing a heart attack receive aspirin upon arrival at the hospital.
• Approximately 83 percent of pregnant women have prenatal care in their first trimester.
• Over 73 percent of children aged 19 to 35 months have all recommended vaccinations.

The report also indicates that greater improvement in health care quality is possible. For example:

• Only about 20 percent of patients who are prescribed a medication to treat diagnosed depression have at least three recommended followup visits to monitor their medication in the 12 weeks after diagnosis.
• Rates for blood pressure screening are 90 percent, and rates for cholesterol screening in adults 45 or older are more than 80 percent. However, only about 25 percent of people with high blood pressure have it under control.
• Rates of children who are admitted to the hospital for asthma are 29.5 per 10,000.

National Healthcare Disparities Report

The National Healthcare Disparities Report presents data on the same clinical conditions and other measures as the Quality Report as they apply to priority populations, including women, children, the elderly, racial and ethnic minority groups, low-income groups, rural residents, and individuals with special health care needs. The latter includes children with special needs, people with disabilities, and people in need of long-term or end-of-life care.

According to the Disparities Report, there is room for improvement in a number of areas. For example:

• Minorities and people of lower socioeconomic status are less likely to receive cancer screening services and more likely to have late stage cancer when the disease is diagnosed.
• Minorities and people of lower socioeconomic position are less likely to receive childhood immunizations.
• While most of the population has health insurance, racial and ethnic minorities are less likely to repot health insurance compared with whites. Lower income individuals are also less likely to report insurance compared with those who have a higher income.
• Minorities and people of lower socioeconomic status are less likely than others to have a usual source of care.

Availability of the Reports

The measures included in the reports provide an important snapshot of America's health care system. The reports are available on a new Web site, http://www.qualitytools.ahrq.gov, which serves as a Web-based clearinghouse to facilitate use of the reports by health care providers, health plans, policymakers, purchasers, patients, and consumers to improve the quality and safety of health care.

These reports point to an important priority for HHS and AHRQ to ensure that all Americans have the safest, highest quality health care services possible. Future reports will help the Nation make continuous improvements by tracking quality through a consistent set of measures that will be updated as new measures and data become available.

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