5

Reactor Panel

The final session of the workshop consisted of a panel discussion by three experts who gave their thoughts and reactions to the earlier presentations.

BRIAN SMEDLEY

Brian Smedley is vice president at the Joint Center for Political and Economic Studies and director of its Health Policy Institute. He is also a former Institute of Medicine staff member who worked on the study that culminated in the report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (Institute of Medicine, 2003), which examined whether race and ethnicity play a role in predicting the quality of health care (after insurance status and other variables are statistically controlled for).

Smedley noted that some people were quite shocked that Unequal Treatment showed that race and ethnicity do play a role: people of color tend to receive lower-quality health care. Numerous published studies in the social science literature demonstrate that these inequalities exist and that racial differences persist in health care in the United States, even when socioeconomic factors are considered. It is critical, then, to look at how and why race is important in predicting who gets what kind of care.

Some readers were less surprised by the findings described in Unequal Treatment. When research looking at discrimination in housing opportunities, mortgage lending, and employment hiring is considered, the data are striking. One study demonstrated that when the credentials of two identical



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5 Reactor Panel The final session of the workshop consisted of a panel discussion by three experts who gave their thoughts and reactions to the earlier presentations. BRIAN SMEDLEY Brian Smedley is vice president at the Joint Center for Political and Economic Studies and director of its Health Policy Institute. He is also a former Institute of Medicine staff member who worked on the study that culminated in the report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (Institute of Medicine, 2003), which examined whether race and ethnicity play a role in predicting the quality of health care (after insurance status and other variables are statistically controlled for). Smedley noted that some people were quite shocked that Unequal Treatment showed that race and ethnicity do play a role: people of color tend to receive lower-quality health care. Numerous published studies in the social science literature demonstrate that these inequalities exist and that racial differences persist in health care in the United States, even when socioeconomic factors are considered. It is critical, then, to look at how and why race is important in predicting who gets what kind of care. Some readers were less surprised by the findings described in Unequal Treatment. When research looking at discrimination in housing opportuni- ties, mortgage lending, and employment hiring is considered, the data are striking. One study demonstrated that when the credentials of two identical 47

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48 POLICY INITIATIVES TO REDUCE HEALTH DISPARITIES job applicants (one African American with no criminal record, one white applicant with a criminal record) were reviewed, the white applicant with a criminal record is even more likely to get hired than the African American applicant (Pager et al., 2009). More focus on the issue of structural racism is needed, Smedley said. He commented that the reason that it is possible to use indirect estima- tion (as described in the previous chapter) to predict an individual’s race is because white people and people of color live in separate and unequal communities, with people of color concentrated in neighborhoods with high levels of poverty. Regardless of income level, living in a majority African American community means a higher concentration of poverty, few jobs, underresourced schools, fewer grocery stores, and fewer basic services and amenities necessary to enhance health outcomes. This is true even for Afri- can Americans with middle or upper levels of income. Residential segrega- tion is a key structural element that must be addressed through state and local strategies to reduce health disparities. Eliminating racial segregation relies on two different strategies. Place- based strategies can improve investment in low-income communities that suffer from disinvestment. People-based strategies allow people the mobility to move to communities with opportunity. Opportunity programs such as Section 8 housing vouchers are a strategy to accomplish this. Community health planning is another strategy that state and local authorities can use. Of the few models that exist today, those models have been successful in bringing together a wide range of stakeholders, including health plans, employers, hospitals, other health care systems, and com- munity groups. The goal is to better align the available resources with community needs. Similarly, at the state level, “certificate of need” policies help to keep resources from moving out of those communities that need them most. Smedley concluded by asking the group how a focus on reports like Unequal Treatment can be maintained so that issues of health disparities stay on the table going forward. WINSTON WONG Winston Wong is medical director of Community Benefits and director of Disparities Improvement and Quality Initiatives at Kaiser Permanente, an integrated health care delivery system. Kaiser Permanente has 8.7 million members in eight different regions across the country. The focus of Wong’s comments was on the personal experience and internal dialogue that people of color experience in confronting racism. He noted that it is not surprising that disparities in health care exist, given that inequities exist in every other aspect of American life. Awareness of health care disparities came about

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49 REACTOR PANEL 35 years ago, when the Tuskegee report was released, showing that African Americans were not treated for syphilis so that physicians could study the progression of the disease. The Tuskegee report led the health care com- munity to finally have to admit that disparities exist in health care, just as disparities exist in education and housing. It is necessary to recognize, however, that physicians alone are not going to change the conditions of inequities in health care. It is a problem that everyone must take responsibility for. As a member of a large inte- grated health care system, Wong noted that it is necessary to reflect on how as an institution Kaiser Permanente is dealing with the issue of racism. He suggested that an institution like Kaiser Permanente can take three routes: exacerbate the problem, abdicate the problem, or activate the problem. The health care system exacerbates health care disparities because it is one of the largest polluters in this country: it releases toxic ingredients into the environment, it contributes to the problem of medications in the water supply, and it increases traffic because workers and hospital staff are brought in to build and work in hospitals and health care systems. Abdication occurs when health care workers believe that because of the existence of social determinants in the environment, they themselves cannot do anything to help people. Activation occurs when a health care system takes some accountability for improving health disparities. Kaiser Permanente and Allina Health Systems are examples of this. Wong noted that the United States spends 17 percent of its gross domestic product on health care. This means that health care systems control 17 cents of each dollar. This is a major asset, and this means that health care systems should have an impact far beyond that associated with caring for sick people. For example, careful planning needs to go into how hospitals are built and who gets employed, and the fact that the health care system is culpable in reducing or exacerbating health disparities needs to be remembered. Measurement was the final issue that Wong discussed. He noted that a number of the day’s speakers spoke about the importance of measurement. Measurement is necessary to determine the intensity of the disparities, but it is also necessary to measure improvements to interventions to improve disparities. Further efforts are needed in this area, however. For example, when interventions for increasing immunization rates or efforts to reduce the number of infants born with low birth weight are discussed, interven- tions to increase immunizations are going to be less complicated. Inter- ventions to address low birth weight, by contrast, require several levels of interventions and a multitude of different community partners. A language that can be used to talk about interventions in a consistent and scientific way needs to be developed, Wong said. Wong concluded by noting that the Kaiser Permanente patient dash-

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50 POLICY INITIATIVES TO REDUCE HEALTH DISPARITIES board (a summary of all appropriate patient information that is stored in the electronic health record) is incorporating an “equity button” (to allow patients and staff access to data about racial and ethnic health dispari- ties within the Kaiser system). These data will be reported to the quality improvement group on a regular basis. ATUM AZZAHIR Atum Azzahir is the founder of the Phillips-Powderhorn Cultural Well- ness Center, a nonprofit organization that functions to provide a place where people can learn their own and each other’s cultural traditions around health care practices. The mission of the center is to unleash the power of citizens to heal themselves and build community. The Cultural Wellness Center was created in 1994. Azzahir noted that because of an award from Blue Cross and Blue Shield for the center’s theory of sickness, she feels like the center has been “discovered,” and through this discovery, the center has received much support for its activities. Through a personal tragedy in her own life, Azzahir talked about how what happened is a part of the environment in her community. Her son died at age 47 because of an enlarged heart. As an African American man, the likelihood of him living to be elderly would have been small to begin with. The Cultural Wellness Center attempts to take these feelings of despair and sadness and turn them into knowledge that can be used to build up the community’s members. Azzahir noted that racism was a much discussed topic during the work- shop. The Cultural Wellness Center, which has a long history of antiracist work, made a deliberate decision to move from discussing race and racism to talking about culture and cultural resources instead. The primary focus of the center is on healing and recovery both for people of African heritage and for people of native heritage (Dakota and Lakota people). Other institutions often approach the Cultural Wellness Center to ask whether they may work together as partners. Currently, the center is work- ing to train low-income African Americans to leave the welfare system and obtain meaningful employment. The Cultural Wellness Center sees this as a health care strategy. From 1994 to 1996, Azzahir went into the community and talked to residents: on the streets, in the park, in kitchens, and on porches. This cre- ated the space for a dialogue, and the people she spoke with had much to say. Azzahir spoke to over a thousand people and concluded that loss of community and loss of culture are what make people sick. The Cultural Wellness Center is working on solving this problem so that people may learn how to get healthy. This led to a consideration of questions such as, how do people get well and stay well? And how do people recover from

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51 REACTOR PANEL internalized racism? People in the community responded by asking ques- tions such as, “What is community? How do you define community? How do you define culture? How do we take a collective approach?” These are the challenges that the center faced. In response, a community care giving system was created. The sys- tem consists of elders, aunts, uncles, friends, neighbors, and cultures. The birthing teams that are a part of the community care giving system have delivered hundreds of babies. This has led to grandmother support networks where grandmothers are seen as community guardians. Since its beginning, the Cultural Wellness Center has had over 13,000 visits each year, has delivered over 75 babies with organized birthing teams, and has worked with over 750 first-year medical students and over 500 family practice residents. The center also employs community system navigators that find answers to questions, accompany community members to the doctor, and help them develop ways to work for themselves. This is consistent with the first rec- ommendation in the paper of Larry Cohen, Anthony Iton, Rachel Davis, and Sharon Rodriguez paper, A Time for Opportunity: Local Solutions to Reduce Inequities in Health and Safety (see Appendix A). Azzahir noted that she would add the inclusion of culture to the community: culture, com- munity, and health are all connected. She further noted that because the process of research is knowledge production, it is essential to include communities and cultural groups. These groups learn from one another, teach one another, and view elders as authorities. This is directly related to the recommendation about insti- tuting culturally and linguistically appropriate screening. The community elders attend physician appointments with patients, they talk with the providers, and they participate in health care-related decision making. In many cultural communities, health care decisions are seen to be family or team decisions. Unfortunately, HIPAA (Health Insurance Portability and Accountability Act) laws sometimes collide with this form of decision making. Cultural knowledge is also critical when surgical procedures are under discussion. Some types of surgical procedures are taboo for some communi- ties. For example, the Ethiopian and Somali residents of the Phillips-Pow- derhorn neighborhood are suspicious about organ transplants because they fear the potential “manufacturing” of new limbs. Such beliefs are all a part of the cultural underpinnings of what people believe about the human body. Azzahir closed her comments by stating that a community care system is needed to operate alongside the health care system. The community care system can help to redefine research and can help to consider prevention approaches based on cultural knowledge systems.

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52 POLICY INITIATIVES TO REDUCE HEALTH DISPARITIES QUESTIONS AND DISCUSSION Workshop participant Sarah Sensman of the Center for Prevention at Blue Cross and Blue Shield of Minnesota asked the first question following the reactor panel. She noted that the lesbian, gay, bisexual, and transgender (LGBT) community, which has a large presence in Minnesota, also suffers from clear health inequities. For example, over 40 percent of LGBT adults use tobacco. Stigmatization and marginalization are also major problems in this community. She explained that Blue Cross and Blue Shield are working on plans to collect data so that it may reach and better serve the LGBT community. Saundra Crump of Bioethical Solutions asked about providers. It makes sense, she said, that an insurance plan would want its members to stay healthy because it makes them money, but the providers make money only when their patients are sick. Winston Wong responded that under health care financing reform, the concept of bundled payments to providers will enable them to work toward better health outcomes overall for patients. This would be in lieu of being reimbursed for each separate procedure. It is unclear at this time whether and how this will mitigate health care disparities, he said; the health care system needs to ensure that a patient’s overall clinical outcome is improved by that provider feeling accountable for that patient’s care. Saundra Crump also made the point that health care funding cannot be used for the types of wellness services provided by the Cultural Wellness Center. Wellness and prevention are a part of President Barack Obama’s stimulus package, Winston Wong said; this is changing the game around focusing on prevention and wellness rather than sickness. Echoing these thoughts about prevention and wellness, workshop par- ticipant Sam Simmons described the work that he does with Atum Azzahir on a local radio station. He said that they had seen promising results from sharing health information on the radio. Simmons noted that the critical feature is reintegrating culture into the community, and he emphasized the importance of building and sustaining community partnerships. Patricia Baker from the Connecticut Health Foundation raised the issue of the disparities report card from Joel Weissman’s presentation. Baker’s foundation issued a state-level report card, and she wondered if the report card was a reflection of the health of the community. How does one ensure that the right outcomes are being measured? Joel Weissman responded that the Seattle, Washington, health department is doing work around healthy communities and that it could serve as a resource. Brian Smedley commented that it is what happens after the report card is issued that is important. It is critical to ensure that resources are tied to the outcomes of report cards.

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53 REACTOR PANEL Joel Weissman discussed the fact that people in the United States no longer think that the nation has the best health care system in the world. European nations, in fact, have better outcomes, better care, fewer health disparities, and greater satisfaction. The United States needs to transform the way that health care is organized and delivered. Simply changing pay- ment systems will not change the health of the community, he said. Change in the training of physicians is needed as well, Weissman explained. Medical students are not taught how to do population health, how to work with communities, how to work on teams, and how to use community health workers to address local health concerns. The medical home, he said, is a step in this direction. Atum Azzahir of the Cultural Wellness Center described the center’s working relationship with Allina Health Systems. She noted that the system was open to hearing the community’s vision for health and its definition of health. It is a partnership, Azzahir said; in this way, members of the community are not made to feel like they are victims. This relationship has made the collection of data community much easier because community members see themselves as the beneficiaries of the data collection process. Workshop participant Terry Long suggested that the use of a payment system can serve as an incentive for patients to change their behavior. He used the example of his own health plan, which pays him a monthly incen- tive to exercise a certain number of times per week. This would encourage community members to take charge of their own health and to engage in more positive health behaviors. Atum Azzahir of the Cultural Wellness Center responded that although this could be a successful strategy, the reasons behind unhealthy behavior also need to be considered. She noted that community members have told her that what makes them want to engage in healthy behaviors and take better care of themselves is having a purpose for living. In other words, behavior change can happen when people feel that they have something to live for. Larry Cohen, one of the writers of the commissioned paper (see Appen- dix A), commented that the concept of looking at the culture of a commu- nity makes a great deal of sense to him. Using the concept of behavioral norms, he explained that behavior can be changed by changing community norms. For example, before car seat laws for infants and children, less than one in four parents used car seats for their children. When the law passed, implementation of the new policy led virtually all parents to use car seats for their children. This change in policy led to changes in a cultural norm. Building upon this idea of norms, Cohen stated that doctors and medical institutions need to make the community and the members of that com- munity the center of the debate. Annette Williamson of the Department of Health in England said that

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54 POLICY INITIATIVES TO REDUCE HEALTH DISPARITIES the U.S. concept of a health disparities report card was not dissimilar to the “primary care balance score card” used in England. Health in England is increasingly focused upon primary prevention within communities and social capital, an area of potential collaboration for the United States and England. Williamson also said that each local authority and primary care trust conducts an annual joint strategic needs assessment that considers clinical services, social care, and community perspectives to ensure effective targeting of services. Abebech Mimi Girma of the Cultural Wellness Center suggested that the focus needs to move away from disparities and to health as a whole. For example, everyone is exposed to television advertisements from phar- maceutical companies. Everyone has access to things that are not protected by the Food and Drug Administration. Girma said that those things that make people well spiritually, emotionally, physically, and mentally need to be evaluated. Jeff Levi raised the issue of the responsibilities of public health agencies to improve the health of a community and its residents. A cultural shift in the field of public health, medicine, and communities is needed. A common definition of “prevention” is also needed. Levi also brought the conversation back to Sarah Sensman’s earlier comments about disparities affecting the LGBT community. He said that the same issues of looking at what “community” means apply. Because some people are too uncomfortable to talk about the reasons and the cul- ture underlying behaviors in the LGBT community, health care is not doing a good job of using prevention strategies to change these behaviors. What is needed, Levi said, is good leadership from the top that forces change in the public health and medical communities. Roundtable member Jim Kimmey of the Missouri Foundation for Health (MFH) offered a historical perspective on health care reform. In 1994, 1970, and 1912, when health care reform was discussed, the concept of community was not discussed and the existence of health disparities was not recognized. So, the current discussion of health care reform is a very different conversation than the discussions that have taken place over the past 35 or 40 years. Kimmey also suggested that the role of the philanthropic sector has not been adequately addressed in discussions of health care reform. The philanthropic sector is not constrained by the same things that constrain state and local government agencies. In particular, state and regional foun- dations can do a number of things to address social determinants of health. For example, MFH provides funding to 84 counties in Missouri and has an endowment of over $820 million. Roundtable cochair Mildred Thompson mentioned the major initiative funded by the Robert Wood Johnson Foundation to address childhood obe-

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55 REACTOR PANEL sity. She echoed Kimmey’s comments and noted that more attention needs to be paid to the role of philanthropy in general. Atum Azzahir of the Cultural Wellness Center presented another per- spective on the philanthropic sector. Because they are informed by data and scientific knowledge, foundations have expected outcomes. Funding, therefore, is dependent on achieving those outcomes. She noted that some- times their criteria for success are narrower than the community’s criteria. It is critical to discuss the research, the outcomes, and the funding when relationships are being built between community organizations and funders. Workshop participant Helen Bassett raised the issue of health literacy and how important it is to address health literacy when working with com- munity members about health. She noted that the role of health literacy in community capacity “cannot be underestimated” and should be a part of all partnerships between health systems and community organizations. Health care rationing was discussed by workshop participant Saundra Crump. The health care system cannot afford to give every patient every service, she said, particularly with the large number of aging baby boomers entering the health care system. But this cannot be a top-down decision; it has to occur at the grassroots, community level. Health care systems and the government cannot be making decisions about who gets what. Larry Cohen noted that rationing does exist de facto in the United States. The United States, he said, rations by price—what people can afford. In response, Annette Williamson said that the National Health Service in the United Kingdom has finite resources and infinite demand; therefore, health care resources are distributed according to need and evidence of impact. A recent example of evidence-based care included the drug tamoxifen, used to treat breast cancer, which was not universally available because of the cost. The National Institute for Clinical Excellence in England (NICE) assessed the evidence surrounding the cost and impact of treatment in relation to the quality of life years gained; NICE has now assessed tamoxifen to be an effective treatment, and it is now widely available. Williamson stated that there must be a rationale and clear evidence in support of resource use and impact/outcome. CLOSING COMMENTS Roundtable chair Nicole Lurie ended the day with her final observa- tions about the workshop. The workshop was to accomplish three things. The first, she said, was to highlight how state, local, and international policies can have an impact on racial and ethnic health disparities. By highlighting some promising models and sharing some examples of what works, one can see what is possible. Hearing about how states (Minnesota and Massachusetts) and another country (England) have addressed issues

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56 POLICY INITIATIVES TO REDUCE HEALTH DISPARITIES of health care inequities speaks to the importance of the kinds of invest- ments necessary to achieve better health outcomes for all racial and ethnic groups in the future. Lurie was the director of the Center for Population Health and Health Disparities at the Rand Corporation. The center’s research focuses on the role of place in health outcomes, specifically, the effects of a neighborhood’s socioeconomic status (SES) and how that differs from both individual attributes (such as gender or education) and individual health behaviors (such as smoking or exercise). Research conducted at the center indicates that for women, the risk of death associated with SES, independent of individual attributes and health behaviors, is about 50 percent higher in poor neighborhoods (those neighborhoods in the lowest SES quartile) than neighborhoods in the highest quartile. Lurie noted that biological markers are associated with living in neighborhoods of high poverty. High levels of stress are common in poor neighborhoods; this, in turn, leads to heightened levels of cortisol in the bloodstream, high blood pressure, and then heart disease. This process, however, is invisible to everyone until the final diag- nosis of heart disease is made. Although the biological processes of stress are invisible, neighborhood conditions are not. Robert Johnson of the Center for Population Health and Health Disparities has studied exposure to neighborhood poverty over the life course. He discovered that exposure to concentrated neighborhood poverty during early childhood is directly predictive of the differences between African Americans and whites in the development of hypertension. The cumulative effects of poverty are even more destructive. Health care systems, however, are also a part of the neighborhood. They can serve an important leadership role in the community by stimu- lating the development of policies, partnerships, and investments that can lead to healthier outcomes for everyone. What is interesting is that this occurs less so because of the actual provision of clinical care. Rather, it is the health system’s leadership role that is important. Allina Health Systems is a perfect example of this. Lurie noted that local policies are critical and much easier to influence than federal policies. The federal government is a harder ship to steer, she said. However, it is essential to look at federal policy in terms of health care reform efforts. Insurance coverage for everybody is going to take the country a long way and will have a particularly important impact on early childhood health and wellbeing. There are also creative ideas about payment mechanisms, bundled payments, and different kinds of financing mechanisms that can be linked to incentives. Finally, creation of a “well- ness trust” to ensure a continued focus on community prevention has been discussed. Aside from health care reform efforts, other investments must be con-

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57 REACTOR PANEL sidered. Investing in the community and in community prevention efforts is essential. So is investment in early childhood programs; those investments should actually be treated as investments in health. Addressing the environ- mental determinants of health to improve air and water quality must also occur sooner rather than later. Finally, investments in housing should also be seen as investments in health. Throughout the workshop, the concept of “building community” was discussed. Using new technologies such as Facebook is another approach to building community that has not been given much thought before. It is another form of community building that needs to be considered. Lurie closed her comments with a story about community building dur- ing the 2008 presidential election. She volunteered in a Philadelphia neigh- borhood where prior elections had seen much voter intimidation. However, during the 2008 election, this low-income neighborhood was galvanized. The campaign office was incredibly well organized and had an abundance of volunteers who poured in from the streets. Although it was a very poor neighborhood, Lurie also felt very safe because of the sense of community surrounding the excitement of the elec- tion. She spoke with roving groups of adolescents who wanted to know where to get political buttons or how to help. She went door to door to encourage people to vote. Over and over, Lurie said, neighbors were going door to door to help their neighbors vote. What is important to take away from this story is that these are people who are seen to be “hard to reach” in the public health community. For many of the residents of that Philadelphia neighborhood, they did some- thing they had never done before: they voted, and they encouraged others to vote. This was all community building. This was also the creation of new social networks, new kinds of messaging, and new kinds of communica- tion. The challenge is, how can what was seen in that election be used to transform health? Creative thinking must be given to how to use new tools, new knowledge, and what is already known about community building to improve the health of that neighborhood, that community, and the nation as a whole. REFERENCES Institute of Medicine. 2003. Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, DC: The National Academies Press. Pager, D., B. Bonikowski, and B. Western. 2009. Discrimination in a low-wage labor market: A field experiment. American Sociological Review 74(5):777–799.

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