4

Federal Perspectives on
Reducing Health Disparities

Noting that making further progress in the reduction of health disparities is going to take a much longer period of time, session chair Mildred Thompson said that the speakers on the panel described in this chapter would be discussing potential solutions. In 2000, the first real legislation focusing on health disparities was signed into law by President Bill Clinton—Minority Health and Health Disparities Research and Education. Among other actions, the National Center on Minority Health and Health Disparities (NCMHD) was created within the National Institutes of Health (NIH), and the Agency for Healthcare Research and Quality (AHRQ) was tasked to measure disparities every other year. Other federal efforts to reduce health disparities have built upon these actions.

JOHN RUFFIN

John Ruffin is director of NCMHD (now the National Institute on Minority Health and Health Disparities [NIMHD]) and oversees the agency’s budget of approximately $210 million. Under Ruffin’s leadership, NIH convened its first summit on health disparities in 2008.

Ruffin began his comments by referring to Healthy People 2010, described earlier by Assistant Secretary Howard Koh. He noted that the hope was that racial and ethnic health disparities would be eliminated by 2010. Although this has not occurred, a foundation is now in place to move toward the elimination of health disparities, Ruffin said.

Acknowledging the efforts of the previous speakers in highlighting health disparities, Ruffin stated that he began the activities of NCMHD by



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4 Federal Perspectives on Reducing Health Disparities N oting that making further progress in the reduction of health dis- parities is going to take a much longer period of time, session chair Mildred Thompson said that the speakers on the panel described in this chapter would be discussing potential solutions. In 2000, the first real legislation focusing on health disparities was signed into law by President Bill Clinton—Minority Health and Health Disparities Research and Educa- tion. Among other actions, the National Center on Minority Health and Health Disparities (NCMHD) was created within the National Institutes of Health (NIH), and the Agency for Healthcare Research and Quality (AHRQ) was tasked to measure disparities every other year. Other federal efforts to reduce health disparities have built upon these actions. JOHN RUFFIN John Ruffin is director of NCMHD (now the National Institute on Minority Health and Health Disparities [NIMHD]) and oversees the agen- cy’s budget of approximately $210 million. Under Ruffin’s leadership, NIH convened its first summit on health disparities in 2008. Ruffin began his comments by referring to Healthy People 2010, described earlier by Assistant Secretary Howard Koh. He noted that the hope was that racial and ethnic health disparities would be eliminated by 2010. Although this has not occurred, a foundation is now in place to move toward the elimination of health disparities, Ruffin said. Acknowledging the efforts of the previous speakers in highlighting health disparities, Ruffin stated that he began the activities of NCMHD by 43

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44 HOW FAR HAVE WE COME IN REDUCING HEALTH DISPARITIES? asking a very fundamental question: “What is it that we should be doing that we are not doing?” Ruffin said that what he and his colleagues at NIH have tried to do is to bring responses to this question and other related recommendations from the community back to NIH and then convert those recommendations into good science. In this way, he said, a new paradigm is created by keeping things simple and asking the right questions. NCMHD was founded in 2000 to bring increased national attention to health disparities. Through its specific programs, together with a formal and comprehensive agenda for research on health disparities, NCMHD has increased investments in minority health and health disparities research and activities and improved collaboration within NIH and across federal agencies. NCMHD Programs The legislation creating NCMHD mandated that the center establish several programs, Ruffin said. The first is a loan repayment program (LRP), which helps attract the best and the brightest people to this field by paying off their school loans. The model for the LRP is borrowed from a similar program established several decades ago for recruiting scientists to study HIV/AIDS. The LRP established by NCMHD has successfully built and diversi- fied the biomedical research and health professions workforce in 49 U.S. states, and more than 2,000 individuals have benefited from the program. The program is unique in that graduates from all health professions (for example, physicians, psychologists, and biologists) are eligible, and it is the best way to attract the brightest people working on health disparities. The LRP provides up to $35,000 per year toward student loan repayment if the recipient enters the field of health disparities research. About 38 percent of participants in the LRP are Caucasian, 34 percent are African American, 19 percent are Latino, and about 9 percent are Native American. The second program established by legislative mandate is the Centers of Excellence (COEs) program, Ruffin said. The program has supported more than 85 centers to conduct scientific research on enhancement of the understanding of minority health and health disparities. Most of these COEs are collaborative partnerships between research-intensive universi- ties and institutions that serve minority populations (for example, Emory University with the Morehouse School of Medicine and the University of Alabama with Tuskegee University). The COEs make both parties equal partners in their work together to resolve health disparities. For example, minority institutions can help with the recruitment of minority patients into clinical research or clinical trials. The third program is a research endowment program. The program is

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45 FEDERAL PERSPECTIVES ON REDUCING HEALTH DISPARITIES unique within NIH and has allowed approximately 20 institutions to cre- ate or expand their health disparities research and training opportunities in biomedical research. One outcome of the research endowment program is the creation of endowed chair programs in areas such as HIV/AIDS and cardiovascular disease at institutions serving minority populations. NCMHD also initiated a community-based participatory research (CBPR) program that has brought the community into the research process as equal partners working with scientists and has introduced CBPR to the scientific community as a viable strategy to address health disparities. Ruf- fin noted that one common complaint from communities is that researchers conduct studies within the community until the funding runs out. When the funding ends, the researchers then leave the community and the community reaps little or no benefit from the research. The CBPR program offers 11 years of sustainable funding through three phases. First is a 3-year planning phase, during which partnerships are created and a community needs assessment is conducted. Second is a 5-year research intervention phase; this is followed by a 3-year informa- tion dissemination phase. This final phase of funding includes research translation, information dissemination, and community outreach efforts. The ultimate goal of the program is to bring scientific research results back into the community. One unique aspect of the CBPR program is that community-based organizations can now apply directly to NIH for funding. The United States currently has 40 CBPR programs, and 11 of those are led by community- based organizations rather than academic institutions. Ruffin described NCMHD’s minority health and health disparities international research training program. By exposing students to hands- on research experience at sites in 50 countries, a talented pool of under- graduate and graduate students is trained to study health disparities in their careers. The international program is administered through 24 academic institutions. Other new initiatives that Ruffin implemented include an investiga- tor-initiated research grant program for research investigating the social determinants of health. Another recent initiative focused on dealing with faith-based issues. The element common to these new initiatives is that they arise from issues that the community believes need to be addressed by NIH. The scientific potential for the reduction of health disparities exists, Ruffin said, and it is NIH’s responsibility to continue to increase support for intramural and extramural research programs focusing on the reduction of health disparities. For example, the NCMHD intramural program will focus on the linkage between the biological and non-biological determi- nants of health in populations in which health disparities exist. This will

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46 HOW FAR HAVE WE COME IN REDUCING HEALTH DISPARITIES? lead to a pool of investigators that will enhance the diversity of the NIH intramural research program. Through the intramural program, NCMHD also launched a career development initiative called DREAM (Disparities Research Education Advancing Our Mission). An extension of the LRP, the DREAM program is designed to retain those LRP recipients conducting biomedical research on health disparities by offering a career development path. The program provides 5 years of support to create and sustain a research program in health disparities, with the first 2 years of the program taking place at NIH in the intramural program and the final 3 years of the program taking place at the originating academic institution. The program creates a career development track for scholars investigating health disparities and creates a growing cadre of researchers who are the best and the brightest in this field of inquiry. The passage of the Patient Protection and Affordable Care Act (ACA) in 2010 also meant changes for NCMHD, Ruffin explained, the most important being the elevation of NCMHD from having the status as a center within NIH to being one of the institutes of NIH. The newly cre- ated NIMHD is responsible for meeting a congressional mandate requiring NCMHD to coordinate all minority health and health disparities research activities for NIH. One principal component of the efforts to coordinate research activities is NCMHD’s responsibility for the development of the NIH Health Disparities Strategic Plan and Budget. The strategic plan out- lines the health disparities research priorities for each of the 27 NIH insti- tutes and centers. The plan will be posted on NCMHD’s website for public recommendations. Again, Ruffin emphasized, comments and suggestions from the public are encouraged. NCMHD Partnerships The other important component needed to achieve success in the reduc- tion of health disparities is a focus on partnership and collaboration. Ruffin noted that health disparities are a complex problem, and to address these issues, agencies need to work together. NCMHD thus works with partner agencies and programs outside NIH: • the REACH (Racial and Ethnic Approaches to Community Health) program of the Centers for Disease Control and Prevention (CDC), • the Health Resources and Services Administration (HRSA) Health Disparities Collaborative, • the U.S. Department of Justice (DOJ) (juvenile detention research), • AHRQ’s EXCEED (Excellence Centers to Eliminate Ethnic/Racial Disparities) program,

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47 FEDERAL PERSPECTIVES ON REDUCING HEALTH DISPARITIES • the National Science Foundation (science education initiatives), and • the U.S. Department of Health and Human Services (HHS) Office on Minority Health (OMH) (outreach activities). These critical federal collaborative activities help to develop programs and address important issues on health disparities, Ruffin noted. Ruffin emphasized that interest in the reduction of health disparities is not enough; it should also be a priority. Once the reduction of health disparities becomes a priority, the resources required to make it happen will follow. CAROLYN CLANCY Carolyn Clancy is director of AHRQ within HHS and launched the first report to Congress on disparities in health care and health care quality (AHRQ, 2003). Clancy began her presentation by acknowledging that awareness about health disparities has grown dramatically in the past 10 years. With the passage of the ACA, the stage is set to make progress in eliminating dispari- ties because people will have better access to health care. However, Clancy cautioned that although access to health insurance is necessary, it is not sufficient. Everyone needs to continue to push to reduce health disparities. AHRQ was created at the end of 1989 in response to emerging research demonstrating significant variations in Medicare spending in different regions of the United States and that populations in those regions where spending was higher did not have better health outcomes. The hope was that the Medicare data could be shared with researchers, who in turn could provide the agency with information about what works and what works with which populations. The agency quickly discovered that although Medicare claims are good for billing purposes and collection of fees, the claims cannot provide the critical information needed to make clinical inferences about medical procedures. However, Medicare claims forms can be linked to the Medicare enroll- ment database so that information about a patient’s race, ethnicity, and other sociodemographic information can be used to examine disparities. This information helped to make the case that health disparities are per- vasive in the United States. Clancy also noted that the majority of studies reviewed in the Institute of Medicine (IOM) report Unequal Treatment (IOM, 2003) were funded by AHRQ.

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48 HOW FAR HAVE WE COME IN REDUCING HEALTH DISPARITIES? AHRQ Quality and Health Care Disparities Reports AHRQ is also responsible for producing annual reports on quality and disparities. Clancy explained that steady and statistically significant improvements in quality of care have taken place every year. However, she noted that a big gap remains between the best possible care that could be received and the care that is routinely provided. Quality-of-care problems, Clancy said, are pervasive. The health care disparities reports continue to demonstrate the wide- spread disparities in access to care and the quality of care in association with individual patient characteristics, such as race, ethnicity, and income (AHRQ, 2007, 2009). As measured by the number of page views online, the health care disparities reports are widely used and studied. Clancy addressed the importance of the data in these reports by noting that they are used within HHS to guide efforts to reduce health disparities. She pro- vided several examples of how the data from these reports have been used. The first health care disparities report was released at the end of 2003. Looking at the findings, Clancy pointed out that the report has limited information about why disparities in health care exist (Box 4-1). Quoting the reports, she said “the most important limitation of this first report is the scarcity of information about why disparities in healthcare exist” (AHRQ, 2003, p. 222). The 2006 report (AHRQ, 2007) noted that the disparities in qual- ity measures and access measures remained and that disparities between whites and other racial and ethnic groups had narrowed only for African Americans for the core quality measures if conditions were controlled by a clinician or health care system. On the other hand, for the core access measures, African Americans saw no improvements. The 2008 report (AHRQ, 2009) showed that disparities were not get- BOX 4-1 Key Findings in the AHRQ 2003 National Healthcare Disparities Report • Inequality in quality exists. • Disparities come at a personal and societal price. • Differential access may lead to disparities in quality. • Opportunities to provide preventive care are frequently missed. • Improvement is possible. SOURCE: AHRQ (2003).

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49 FEDERAL PERSPECTIVES ON REDUCING HEALTH DISPARITIES ting smaller. That report identified a core set of quality and access measures that are tracked over time (from 2000-2001 to 2005-2006): • For Latinos, 80 percent of the core access measures either remained unchanged or got worse. • For African Americans and Asian Americans, 60 percent of the core access measures either remained unchanged or got worse. • For low-income populations, 57 percent of the core access mea- sures remained unchanged or got worse. The quality and health care disparities reports make it clear that dra- matic improvements in quality, safety, and disparities reduction have not taken place. One exception, said Clancy, is the Michigan Project to reduce serious, often fatal, bloodstream infections for people in intensive care units (ICUs). This intervention varies from hospital to hospital, but all hospitals share a common focus on changing the culture of the hospital. For example, nurses can intervene if they believe that the physician is not prepared enough for a procedure, and more importantly, they are encour- aged to do so and are reinforced for doing so. The hospital staff thus see a connection between their everyday activities and the overall goals of the health care team. Hospitals using the checklist from the Michigan Project report sustained dramatic reductions in infections for ICU patients. Clancy emphasized that much of the effort to reduce health disparities needs to happen at the local level. This is a major strength of the commu- nity-based participatory research projects funded by NCMHD. Plenty of opportunities to make improvements in health disparities and quality of health care are available, as outlined in provisions of the ACA. For example, the new law will change the health care marketplace for insur- ance through the creation of exchanges and new requirements for health insurance plans. However, it bears repeating that access to health care is necessary but not sufficient to reduce health disparities and improve quality. In the Medicare population, for example, although national health insur- ance is available at age 65 years, people of color and low-income seniors still have worse health outcomes. So, although access to health insurance is a good place to start, more dedicated work will be needed to reduce and eliminate health disparities. Quality and disparities reduction efforts should be intrinsically linked, Clancy said, and it is essential that health care providers become more comfortable with treating racially and ethnically diverse populations. For example, the Robert Wood Johnson Foundation project Expecting Success involved 10 hospitals that developed and then shared tools for improving cardiac care for African American and Latino patients. By developing effec-

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50 HOW FAR HAVE WE COME IN REDUCING HEALTH DISPARITIES? tive quality-improvement strategies, the hospitals were then able to improve their provision of cardiovascular care to African Americans and Latinos. Clancy reviewed other important efforts to move the quality and dis- parities agendas ahead, including HHS’s response to the American Reinvest- ment and Recovery Act (ARRA). ARRA legislation allocated $1.1 billion for comparative effectiveness research programs, funded through AHRQ, NIH, and the HHS Office of the Secretary. Those programs included ones being carried out by NCMHD (HHS, 2009). Disparities Reduction and Health Information Technology Clancy discussed the role of AHRQ’s health information technology (IT) portfolio of innovative projects with the objective of ensuring that health IT can be used as one of several potential solutions in addressing health disparities. For example, the Prospective Outcome Systems Using Patient- Specific Electronic Data to Compare Tests and Therapies (PROSPECT) Initiative, also funded through ARRA, includes a focus on ensuring that underrepresented populations are represented in clinical trials. The goal is to assist clinicians with the development of better electronic data records so that the data in those records can be used for research. This will lead to the availability of data to perform comparative effectiveness research on diagnostics, therapeutics, behavioral interventions, and procedures. A sec- ond innovative program is the Middle Project, which uses innovative com- munication technologies to improve the health of young African American women through the creation of a virtual patient advocate avatar. Finally, a third project involves the use of health IT as a strategy to improve quality in discharge planning. After the release of the 2006 health care disparities report in 2007, Clancy said, AHRQ reviewed what were seen as the major targets of opportunity from the report. Improving diabetes prevention among Latino elders emerged as a major target of opportunity, and the Latino Elders Initiative was designed to improve the self-management of diabetes. The agency began to work with other agencies such as CDC and the Admin- istration on Aging in eight metropolitan communities. Each of the com- munities is home to a high proportion of Latino elders. A research agenda focusing on the initiative is also in development. Disparities Reduction and AHRQ Collaborations Clancy noted several other collaborative activities that AHRQ is involved with to reduce health disparities, including

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51 FEDERAL PERSPECTIVES ON REDUCING HEALTH DISPARITIES • the Roundtable on the Promotion of Health Equity and the Elimi- nation of Health Disparities at the IOM, which engages parties from academia, industry, government, philanthropy, the corporate sector, and the community to facilitate ongoing attention to health disparities issues, www.iom.edu/healthdisparities; • the Federal Collaboration on Health Disparities Research, co-led by NCMHD and OMH, which identifies and supports research collaborations across federal departments and agencies including the Department of Housing and Urban Development, the Environ- mental Protection Agency, the Department of Transportation, and others, http://minorityhealth.hhs.gov/fchdr; and • the National Partnership for Action to End Health Disparities, spearheaded by OMH, which is a multifaceted effort to mobilize and connect individuals and organizations across the country in efforts to eliminate health disparities, http://minorityhealth.hhs. gov/npa. Emphasizing that although the awareness of health disparities has increased and the measurement of health disparities has improved, actual change is occurring more slowly, Clancy said. To sustain the promise of implementing health care reform, better and more robust efforts are needed in all aspects of data collection. Box 4-2 outlines several future directions that are guiding the work of AHRQ in advancing excellence in health care for all. BOX 4-2 Future Directions for AHRQ • Improve the quality of health care and health care services for all Americans. • romote consistent, reliable, and longitudinal data collection to identify the P nature and extent of disparities, develop and target quality-improvement initia- tives, and measure changes over time. • artner with communities to ensure research activities are relevant to their P populations and that findings are adopted and implemented effectively. • valuate the importance of cultural competence and health literacy to improve E quality and reduce health care disparities. SOURCE: Clancy (2010).

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52 HOW FAR HAVE WE COME IN REDUCING HEALTH DISPARITIES? DISCUSSION Winston Wong of Kaiser Permanente asked Carolyn Clancy about the National Healthcare Disparities Report. Given that many speakers throughout the workshop emphasized the importance of looking at issues of empowerment, civil rights, economic opportunity, and residential seg- regation as a means of reducing health disparities, he asked if AHRQ was considering the integration of these issues within the next National Health- care Disparities Report. Clancy noted that an IOM committee had provided recommendations for future directions. She also said that AHRQ wants to get better data from the local level because better local data overall can help provide an understanding of the interplay between the social determinants of health and inequalities in health care. John Ruffin concurred, stating that NCMHD is focused on funding research related to the social determinants of health. A participant asked about the role of the federal agencies in encour- aging and recognizing the importance of community-based participatory research. Clancy said that this is at its core an opportunity to strengthen communities. However, she noted that researchers, grant makers, and peer reviewers often do not recognize this. In response, Ruffin stated his “strong opinion” that the community should be a part of every phase of a research project, from the planning to the intervention, evaluation, and dissemina- tion efforts. He said that “the operative term here is ‘inclusion from begin- ning to end.’” REFERENCES AHRQ (Agency for Healthcare Research and Quality). 2003. National Healthcare Disparities Report. Rockville, MD: Agency for Healthcare Research and Quality. AHRQ. 2007. National Healthcare Disparities Report. Rockville, MD: Agency for Healthcare Research and Quality. AHRQ. 2009. National Healthcare Disparities Report. Rockville, MD: Agency for Healthcare Research and Quality. HHS (Department of Health and Human Services). 2009. Comparative Effectiveness Research Funding. http://www.hhs.gov/recovery/programs/cer (accessed February 1, 2012). IOM (Institute of Medicine). 2003. Unequal treatment: Confronting Racial and Ethnic Dis- parities in Health Care. Washington, DC: The National Academies Press.