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3 Potential for Interagency Collaboration I n response to its statement of task, the committee examined how pri- mary care systems supported by the Health Resources and Services Administration (HRSA) and public health departments supported by the Centers for Disease Control and Prevention (CDC) could integrate in specific areas. (Descriptions of HRSA-supported primary care systems and state and local health departments can be found in Appendix B.) The term “health center” is used here to refer to organizations that receive grants under the Health Center Program as authorized under section 330 of the Public Health Service Act, as amended, and federally qualified health cen- ter look-alike organizations, which meet all the Health Center Program requirements but do not receive Health Center Program grants. The term does not refer to federally qualified health centers that are sponsored by tribal or urban Indian health organizations, except for those that receive Health Center Program grants. The committee selected three areas on which to focus: maternal and child health (MCH) (specifically the Maternal, Infant, and Early Childhood Home Visiting Program), cardiovascular disease prevention, and colorectal cancer screening. These topics were selected because they lend themselves to a life-course perspective, involve aspects of mental and behavioral health, and touch on issues relevant to health disparities. They also represent a mix of programs led by HRSA and CDC. The principles presented in Chapter 2 were used as an organizing framework for the discussion of these three areas. The discussion of each area is organized in two parts: (1) how the area relates to the principles, 79
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80 PRIMARY CARE AND PUBLIC HEALTH and (2) potential actions, needs, or barriers that affect primary care–public health integration in the area. MATERNAL AND CHILD HEALTH One of the provisions of the Patient Protection and Affordable Care Act (ACA) creates the Maternal, Infant, and Early Childhood Home Visiting Program (referred to here as the Home Visiting Program). While the term “home visiting” can have different meanings in different contexts, it gener- ally refers to a trained professional who visits a new mother in her home to provide advice and support and assess the home environment for the newborn. This provision of the ACA is based on years of work suggesting that home visiting for at-risk families can prevent child abuse and neglect, promote child development, increase parental support and effectiveness, and assist in reducing health disparities (Chapman et al., 1990; Duggan et al., 2000; Olds et al., 1997, 2004). In 2009, the American Academy of Pediatrics endorsed home visiting as an early-intervention strategy that benefits children, and encouraged the development of comprehensive pro- grams that target at-risk families and involve professionally trained home visitors (AAP, 2009). The aim of the grant-based Home Visiting Program is to go beyond individual patient care to include care for families that live in high-risk com- munities. Nurses, social workers, or other trained professionals visit at-risk families in their homes and connect them to health care or other services, such as early education, child abuse prevention, or nutrition assistance. The law requires that states conduct statewide needs assessments to iden- tify at-risk communities, defined as communities with high concentrations of certain types of health risks among children, adolescents, and families. State assessments also must determine the quality of existing programs and their capacity to carry out home visiting and consider the gaps that exist in such programs. Based on the results of these assessments, the Department of Health and Human Services (HHS) is directed to make grants to early childhood home visiting programs to promote improvements in health and socioeconomic status and reduce community and family risks. The Home Visiting Program represents a strong opportunity for inte- gration of primary care and public health because the health care service delivered is not based on an illness or in response to a person seeking care, but instead is aimed at prevention and wellness for all members of a com- munity. This program is administered by HRSA in collaboration with the Administration for Children and Families (ACF), but could be strength- ened through collaboration with CDC. The following section examines the Home Visiting Program according to the principles of integration outlined in Chapter 2 and highlights opportunities for HRSA and CDC.
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81 POTENTIAL FOR INTERAGENCY COLLABORATION Principles of Integration Shared Goal of Population Health Improvement The benchmarks for the Home Visiting Program are broad, encompass- ing areas that touch on the social determinants of health, such as a family’s economic self-sufficiency and improvement in school readiness and achieve- ment. Box 3-1 provides a list of all six benchmark areas. By including the family and community as targets of interest, the pro- gram embraces an ecological perspective on health. Thus, the program was designed from a population health point of view and begins with the goal of improving population health. To make this a shared goal of HRSA and CDC, CDC could be involved in extending the program’s reach. Community Engagement The Home Visiting Program was designed to engage the community with a two-fold emphasis on families who need services and the communi- ties in which those families reside. The grant application requires a detailed needs and resources assessment of a targeted community and specifies the selection of a home visiting program that responds directly to the com- munity’s identified needs. Linking at-risk families to local health centers strengthens (or in some cases creates) a relationship between primary care providers and the family. Through the conduct of rigorous evaluations, key lessons can be distilled that will allow programs to be replicated, recogniz- ing that each community will require a slightly different implementation. BOX 3-1 Benchmark Areas for the Maternal, Infant, and Early Childhood Home Visiting Program • Improved maternal and newborn health • revention of child injuries; child abuse, neglect, or maltreatment; and reduc- P tion of emergency department visits • Improvement in school readiness and achievement • Reduction in crime or domestic violence • Improvements in family economic self-sufficiency • mprovements in coordination and referrals for other community resources and I supports SOURCE: Patient Protection and Affordable Care Act of 2010 (ACA), Public Law 148, 111th Cong., 2d sess. § 2951 (March 23, 2010).
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82 PRIMARY CARE AND PUBLIC HEALTH Through its work with the Community Transformation Grants,1 CDC is well positioned to be involved in supporting community engagement in the Home Visiting Program. HRSA and CDC could investigate ways in which these two community-based programs could interface. Linkages could be explored between communities selected for Home Visiting Pro- gram grants and those selected for Community Transformation capacity- building grants. For example, groups that received grants from CDC to disseminate and amplify lessons learned from Community Transformation Grant programs could work with HRSA to include strategies learned from the Home Visiting Program. Aligned Leadership The Home Visiting Program emphasizes key relationships and oppor- tunities for creating aligned leadership. At the federal level, cooperation with the ACF is required; this requirement has been extended to include the Department of Education, the Department of Justice, the Assistant Secretary of Policy and Evaluation at HHS, and others (Yowell, 2011). At the state level, the grant application requires sign-off by a number of agencies, such as the state child welfare agency, the Child Care and Development Fund, and the State Advisory Council on Early Childhood Education and Care authorized by the Head Start Act. Merely signing off on a document does not indicate aligned leadership, but it does create an opportunity for building a relationship that could lead to alignment. At the local level, the needs assessment process built into the program encourages the forging of local relationships, thereby offering opportuni- ties for relationship building among MCH providers, community health workers,2 community-based organizations, and other critical stakehold- ers. Each of these opportunities presents an occasion for bridging disci- plines, clarifying roles, initiating and managing change, and developing appropriate incentives. Other opportunities exist to build aligned relationships. For example, HRSA currently has 22 staff persons dedicated to the Home Visiting Pro- gram. This includes a dedicated Home Visiting Program staff person as well as a dedicated staff person for the Title V State Block Grant program at each of the 10 regional HHS offices. This co-location in each of the regional HHS offices fosters on-the-ground collaboration and integration of these 1 Community Transformation Grants were authorized in the ACA. For more detailed infor- mation, see Chapter 4. 2 A community health worker is defined as a person who links members of the community to health services. The designation encompasses promotores de salud (community health workers in Spanish) and patient navigators (who work with specific patients), as well as other terms.
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83 POTENTIAL FOR INTERAGENCY COLLABORATION MCH programs within HRSA. Currently, CDC has no MCH staff in these offices. Building relationships between HRSA and CDC staff at the regional level would help align priorities and the implementation of MCH activi- ties. At the state level, the requirement for a needs assessment provides an opportunity for health departments to work with implementing partners. Finally, as programs mature and are evaluated, health departments and implementing partners will have an opportunity to coalesce around strong programs and advocate for the adoption and dissemination of promising results. Sustainability As part of the Home Visiting Program, states must create a resource plan and discuss how the program will fit into existing programs within the community. These actions contribute to the program’s sustainability. On the other hand, it is important to note that the program is funded for only 5 years. Its survival depends on converting its elements into a sustainable practice and financing model, which means building interest and engage- ment on the part of state Medicaid programs, the overwhelming source of health care financing in the highest-risk communities. In fostering this engagement, HRSA and CDC could educate payers, namely the Centers for Medicare & Medicaid Services (CMS) and state Medicaid programs, on the health and financial effects of home visiting, particularly those that allow state programs to begin to reduce costs. Specifically, they could encourage CMS to track the children and families involved in this program to assess its effectiveness. One of the stated goals of the Home Visiting Program is to “establish home visiting as a key early childhood service delivery strategy in high- quality, comprehensive statewide early childhood systems [emphasis in original]” (Yowell, 2011, p. 7). Given the importance of health across the life course, home visiting is an excellent starting point to support the health of young children; however, its impact depends on linkages to other services for children and families, such as early childhood programs; the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC); and Head Start. Beyond conducting a needs assessment, the program could require demonstrating that these links are in place to better serve the target population. Furthermore, through its Maternal and Child Health Epidemiology Program, CDC, in collaboration with HRSA, is working to build capacity in the area of MCH epidemiology. This program assigns senior epidemiolo- gists to state public health departments, as well as local health departments and other venues, in an effort to build analytical capacity focused on the health of women and children. The state needs assessments required by
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84 PRIMARY CARE AND PUBLIC HEALTH the Home Visiting Program provide an opportunity to work closely with state health departments, and the Maternal and Child Health Epidemiology Program could be used as a bridge between the two entities. Data and Analysis Data collection is a fundamental component of the MCH work under- taken by both HRSA and CDC. Through its Title V block grant program, HRSA requires that states and jurisdictions report annually on national performance measures, health system capacity indicators, national out- come measures, and health status indicators. In addition, each state de- velops 7 to 10 state performance measures to address identified priorities and unique needs not addressed by the national measures. Healthy Start, another program administered by HRSA’s Bureau on Maternal and Child Health, requires that grant recipients report data on the characteristics of their program participants, as well as the services they provide. Finally, data collection is a core component of the Home Visiting Program. States must submit a plan that demonstrates how data will be collected for each of the benchmark areas listed earlier in Box 3-1. At CDC, the Pregnancy Risk Assessment Monitoring System (PRAMS) is an ongoing state- and population-based surveillance system designed to collect information on self-reported maternal behaviors and experiences that occur around the time of pregnancy. This data collection effort gener- ates statewide estimates of perinatal health indicators among women who recently delivered a live infant. Each participating state uses a standardized data collection method developed by CDC. PRAMS staff in each state collect data through mail and telephone questionnaires. Because PRAMS data are state and population based, findings are generalizable to an entire state’s population of women delivering a live-born infant. PRAMS not only solicits information concerning the timing of and barriers to obtain- ing prenatal care, but also assesses knowledge, attitudes, and behaviors to identify strengths and shortcomings of current models of prenatal care. Similarly, the National Vital Statistics System, part of CDC’s National Cen- ter for Health Statistics, collects information about the timing of the onset of prenatal care. When combined with the number of prenatal visits, this information can be used to assess the adequacy of prenatal care (Heaman et al., 2008). With the wealth of MCH data being collected, the opportunity for promoting integration is strong. In fact, in some ways cooperation is al- ready taking place. For example, CDC’s PRAMS serves as a data source for HRSA’s Title V activities. And both agencies have moved to make their data sources more accessible. CPONDER is a web-based program that allows
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85 POTENTIAL FOR INTERAGENCY COLLABORATION users to access data from PRAMS, while the Title V Information System provides access to Title V data. Progress has been made toward allowing researchers and the public more access to each agency’s data sets, and some of the data are informing programs in other agencies. However, there has been no real move to coordinate the data to maximize efficiencies and assist the end users. The Home Visiting Program offers numerous opportunities for HRSA and CDC to collaborate in establishing practice and outcome performance measurements, but better integration of their data systems will be necessary if these opportunities are to be exploited. Potential Actions, Needs, and Barriers The Home Visiting Program represents a move toward a population health approach. However, integration with CDC could strengthen the program and its impact. HRSA and CDC could take action in the following areas to achieve a partnership based in the Home Visiting Program. Finance Although financing for the Home Visiting Program has been ensured for 5 years, HRSA and CDC need to plan for the program’s sustainability. One action that could be taken to this end would be to work with state Medicaid directors to gather evidence about the financial benefits of this program by tracking the children who are involved. Having this informa- tion would give state Medicaid directors an understanding of the benefits of the program and its value to their Medicaid populations. Incorporating the Home Visiting Program would challenge the notion of what services Medicaid considers to be within its funding scope. Medicaid will pay for services that involve personal health care, including behavioral health and child development services by home visitors. However, it traditionally has not paid for a home visitor to spend time on community health issues or on coordination with such entities as social service agencies, housing services, and WIC; these are deemed to be public or community health services not focused on individual patients, and therefore not reimbursable. The Home Visiting Program provides HRSA and CDC with an opportunity to reposi- tion the discussion about funding and promote population health by work- ing with state Medicaid directors to sustain this program. Currently, MCH programs are funded by HRSA and CDC through sep- arate funding streams, which can create barriers at the local level. There is a need to support local integration efforts by coordinating funding streams at the agency level, thereby empowering primary care providers and public health departments to work together at the local level.
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86 PRIMARY CARE AND PUBLIC HEALTH Governance HRSA and CDC need to provide aligned leadership in the area of governance. The two agencies could consider first establishing their own partnership and then developing training programs in leadership for state and local primary care providers and public health workers. This training could encourage the development of broad community partnerships focused on complex MCH problems. Health Information Technology Increased data sharing and concrete movement toward the integration of health information technology are needed. A sustained effort on the part of HRSA and CDC to promote data sharing among existing Title V, PRAMS, Healthy Start, and other MCH programs administered by HRSA and CDC would strengthen these programs. In addition, the two agencies could advance efforts to improve data sharing and service development in local communities by jointly leading efforts to establish pathways for inte- gration of health information technology with other federal agencies, such as the U.S. Department of Agriculture, which oversees the WIC program. Such integration would facilitate tracking and measuring community-level data that can inform the development of community interventions. For example, understanding the migration patterns in and out of a commu- nity; the age distribution of the population; the availability and condition of housing stock; and how all of these and related factors affect children, mothers, and families would make it possible to devise more effective interventions. Delivery System and Practice CDC’s expertise in MCH currently is not represented in HHS’s regional offices. Providing a staff person who could work directly with the MCH staff provided by HRSA in the regional offices offers an opportunity to align goals around MCH. In addition, directly involving local health centers in the Home Visiting Program would foster relationships between primary care providers and families. And creating and maintaining linkages between the Home Visiting Program and other services for children and families would ensure continuity. HRSA could require such linkages as a formal part of the program. Finally, by linking the Home Visiting Program with data provided by CDC, HRSA could use the program to focus its attention on emerging at- risk communities before they become truly at risk. CDC could train state health departments to determine at-risk or emerging at-risk communities
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87 POTENTIAL FOR INTERAGENCY COLLABORATION and then use those skills to feed into the statewide needs assessment re- quired by the Home Visiting Program. Workforce Education and Training A potential way to expand the capacity of the local workforce would be to conduct training for primary care providers and state and local pub- lic health workers in community needs assessments that take advantage of existing data and incorporate assessment of local resources beyond health care. Examples of such resources include transportation, food availability, and the capacity to partner with social and educational service providers. HRSA and CDC could work together to provide this training. CARDIOVASCULAR DISEASE PREVENTION The American Heart Association estimates that approximately 82.6 million people have one or more forms of cardiovascular disease (Roger et al., 2011). Common forms of cardiovascular disease include coronary heart disease, hypertension (high blood pressure), stroke, and heart failure. In 2007, more than 813,000 people died from a cardiovascular disease— more than from cancer, chronic lower respiratory disease, and accidents combined. As the leading cause of death, coronary heart disease was re- sponsible for nearly half of these deaths (406,351). More than 150,000 of these individuals were younger than 65 years of age. Cardiovascular disease also is an important example of health disparities. African Americans expe- rience significantly higher mortality rates from cardiovascular disease than whites: in 2007, the overall cardiovascular disease death rate per 100,000 was 251.2; the rate was 405.9 and 286.1 for African American males and females, respectively, versus 294.0 and 205.7 for their white counterparts. And death is not the only outcome of cardiovascular disease. As of 2007, approximately 7 million Americans aged 20 and older had experienced a stroke, a leading cause of disability in the United States (Roger et al., 2011). Cardiovascular disease also is very expensive. In 2007, it was estimated to cost more than $286 billion, including $167 billion in direct costs as- sociated with physicians and other health professionals, in-patient services, medications, etc., and $119 billion in indirect costs resulting from lost productivity, illness, and death (Roger et al., 2011). To combat cardiovascular disease, specifically heart attacks and strokes, a joint effort involving HHS, other government agencies, and private-sector partners was launched in September 2011 (Frieden and Berwick, 2011). Known as the Million Hearts initiative, this effort has the goal of prevent- ing 1 million heart attacks and strokes over the course of 5 years. While this effort clearly extends beyond HRSA and CDC working together, the
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88 PRIMARY CARE AND PUBLIC HEALTH committee believes that, given its size and its recent launch, this initiative is the best example with which to illustrate how collaboration between the two agencies around the topic of cardiovascular disease prevention could be strengthened. CDC, along with CMS, is the lead agency for this initiative. Many other agencies, including HRSA, are listed as partners, and all bring an impressive list of programs to bear. As part of the Million Hearts initiative, HRSA and CDC have commit- ted to some integrated activities that are worth noting. Specifically, HRSA is developing new measures for health center program grantees to track aspirin use and drug therapy for lowering LDL cholesterol (HRSA, 2012). If these measures are approved, beginning in 2012, health centers will be re- quired to report annually on them, in addition to the current measures that track blood pressure control and smoking cessation. Known collectively as ABCS, aspirin use, blood pressure control, cholesterol management, and smoking cessation are four key areas CDC emphasizes as ways to prevent heart attacks and strokes (CDC, 2010). By linking these areas to health center program grantee reporting, the agencies will be aligning behind a common goal. There are other programmatic areas in which HRSA and CDC are working to prevent heart attacks and strokes. Linking these programs to- gether, where appropriate, could strengthen each agency’s contribution to the achievement of the Million Hearts goal. Principles of Integration Shared Goal of Population Health Improvement The Million Hearts initiative suggests that the HHS agencies have a shared goal of population health improvement. Achieving the reduction in strokes and heart attacks targeted by the initiative—which is a population health goal—will require contributions from all of the agencies involved. No one agency, regardless of how effectively its programs are run, can reach the targeted goal by working alone. One program HRSA oversees that is contributing to this effort is the Healthy Weight Collaborative, which aims to encourage healthy weight and health equity. This program, funded by HRSA and administered by the National Initiative on Children’s Healthcare Quality, works with health care delivery, public health, and community-based organizations (HRSA and National Initiative for Children’s Health Care Quality, 2011). In its first phase, the collaborative established a team from each HRSA region (10 teams in all) composed of representatives from all three of these sectors (HRSA and National Initiative for Children’s Health Care Quality, 2011). The collaborative is a public–private partnership that involves numerous
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89 POTENTIAL FOR INTERAGENCY COLLABORATION stakeholders. It embraces a population health approach by recognizing that obesity is a multifaceted problem that must be addressed by many parties working together. CDC’s Community Transformation Grants are another example of a population health-focused program aimed at reducing the burden of chronic disease in communities by addressing heart disease, stroke, and other diseases. CDC is using these grants to further the goals of the Mil- lion Hearts initiative by giving priority to grantees that work to address cardiovascular risk factors. The population health focus of the Healthy Weight Collaborative and the Community Transformation Grants could be a starting point for exploring ways in which HRSA and CDC could work together toward their shared goal of population health improvement. While the two programs use different approaches, involving CDC in the Healthy Weight Collaborative and involving HRSA in the Community Transforma- tion Grants could strengthen each program by building on the knowledge each has acquired. Community Engagement In addition to the Healthy Weight Collaborative and the Community Transformation Grants, the portfolios of HRSA and CDC include other programs that involve local communities in the prevention of cardiovas- cular disease. For example, CDC’s Division for Heart Disease and Stroke Prevention administers the WISEWOMAN program, which focuses on reducing the burden of cardiovascular disease among women aged 40 to 64 who are financially disadvantaged. While adhering to a common set of parameters, the program is implemented differently depending on the circumstances of the individual community, but includes such activities as promoting healthy cooking, walking, and smoking cessation. Additionally, through a demonstration project that was recently expanded, HRSA sup- ports community health workers who assist patients with chronic disease, including cardiovascular disease. These community health workers have different tasks based on the needs of the patient population in their com- munity, but they frequently encourage healthy behaviors, assist patients in navigating complex health care systems, and inform members of the community about appropriate screenings. Similarly, CDC’s Division for Heart Disease and Stroke Prevention works in 41 states and the District of Columbia to increase state capacity to define the local burden of cardio- vascular disease and design culturally appropriate interventions to address the problem. With HRSA and CDC each engaging local communities in the effort to promote cardiovascular health, the challenge is getting these programs to work together. Using the Million Hearts initiative as an opportunity, HRSA
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94 PRIMARY CARE AND PUBLIC HEALTH COLORECTAL CANCER SCREENING Colorectal cancer is the third most commonly diagnosed cancer and third leading cause of death due to cancer for both men and women (Ameri- can Cancer Society, 2011). The American Cancer Society estimates that in 2012, colorectal cancer will be responsible for approximately 9 percent of all cancer deaths (American Cancer Society, 2012); for 2011, it is estimated that 141,210 people were diagnosed with colorectal cancer, and 49,380 died from the disease (American Cancer Society, 2011). CDC has reported that from 2003 to 2007, the incidence of colorectal cancer decreased from 52.3 per 100,000 population to 45.5 per 100,000 and that the mortality rate decreased from 19 to 16.7 per 100,000—a decline of 66,000 cases and 32,000 deaths compared with 2002. According to CDC, “screening prevented approximately half of the expected new [colorectal cancer] cases and deaths during 2003-2007 (33,000 new cases and 16,000 deaths)” (CDC, 2011c, p. 889). For screening for colorectal cancer, the U.S. Preven- tive Services Task Force recommends use of the high-sensitivity fecal occult blood test (FOBT), sigmoidoscopy with FOBT, or colonoscopy, which carry a Grade A recommendation for all people aged 50 to 75 (U.S. Preventive Services Task Force, 2008). Yet despite the proven effectiveness of screen- ing, approximately 22 million individuals have never been screened for colorectal cancer (CDC, 2011c). Unfortunately, significant disparities exist in the colorectal cancer screening rates for a number of populations. In 2008, CDC (2011a) found that only 51.2 percent of Hispanics and 62.9 percent of African Americans and Asian and Pacific Islanders over age 50 were up to date on routine colorectal cancer screening, compared with 66.2 percent of whites. Fur- thermore, only 48.6 percent of those with less than a high school diploma and 49.4 percent of those earning less than $15,000 had been appropriately screened, compared with 72.1 percent of college graduates and 74.8 of those earning at least $75,000 in the same age group. CDC also found that while 66.6 percent of insured individuals over age 50 had received routine screening, this was the case for only 37.5 percent of those without insur- ance (CDC, 2011a). CDC’s Colorectal Cancer Control Program funds colorectal cancer con- trol activities in 25 states and 4 tribes. The program, which provides fund- ing for a total of 5 years, has two components—screening promotion and screening provision. Each component is carried out by the states and tribes. The screening promotion component is based on evidence-based strategies recommended by the Task Force on Community Preventive Services and adapted to local situations. Screening and follow-up care are provided to low-income adults aged 50-64 who are unable to pay. The program en-
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95 POTENTIAL FOR INTERAGENCY COLLABORATION courages offering the screening in collaboration with other publicly funded health programs or clinics. Another CDC program, Screen for Life, is an educational campaign that uses celebrities to encourage older adults to get screened for colorectal cancer. The program has been in existence since 1999. Educational materi- als for patients and health care providers have been developed in conjunc- tion with the program’s outreach campaign, While HRSA does not have a colorectal cancer program, integrat- ing CDC’s ongoing colorectal cancer screening activities with the patient- centered medical home transformation process now being initiated at HRSA-supported health centers would appear to be a good way to reach populations with traditionally low colorectal cancer screening rates. In a move to strengthen colorectal cancer screening, HRSA has proposed a new clinical quality performance measure for health centers that, if approved, will track colorectal cancer screening for adults aged 50 to 75. Finally beyond HRSA and CDC, a number of other HHS agencies have cancer screening programs. HRSA and CDC should consider including these agencies in their partnerships. Principles of Integration Shared Goal of Population Health Improvement CDC’s Colorectal Cancer Control Program was designed to address economic disparities by providing screening for those who would not oth- erwise be able to obtain it. This emphasis on vulnerable populations aligns with the work of health centers, which serve these populations. By formally encouraging states participating in the Colorectal Cancer Control Program to link to local providers, CDC is building on this strength of health centers. Several states have made these links. And by including the new proposed performance measure on colorectal cancer screening, HRSA has positioned health centers to work with health departments in identifying members of the population who should be screened. Community Engagement The states and tribes receiving funding from CDC’s Colorectal Cancer Control Program tailor their screening promotion activities to their local environment. Drawing on strategies that have been evaluated by the Task Force on Community Preventive Services ensures that promotion activities are grounded in evidence, but the program allows them to be adapted to the specific conditions in recipient states and tribes. One way health centers connect with the local environment is through
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96 PRIMARY CARE AND PUBLIC HEALTH the use of patient navigators. Patient navigators come from the popula- tions they serve and assist community members with the screening process. With colorectal cancer screening, the tasks they undertake can vary from outreach to communities at homes, places of worship, shopping malls, or places of employment to inreach into medical records to determine who needs to be screened. Once screening has been accepted by patients, the tasks undertaken can be as simple as getting patients to return FOBT tests or arranging a colonoscopy for patients with a positive test. Paskett and colleagues (2011) report that patient navigators spent an average 2.5 hours per case assisting patients. The most common barriers for these patients were (1) out-of-pocket expenses, (2) transportation, and (3) fear of having and dealing with a positive test. Early findings from HRSA’s Patient Naviga- tor Outreach and Chronic Prevention Demonstration Program show that 76 percent of the program’s patients referred to primary care followed up on that referral, and 68 percent of patients referred for screening services made an appointment (Peplinski et al., 2011). The enormous potential of patient navigators or other community health workers to link the commu- nity to health centers is documented in several studies that show significant increases in colorectal cancer screening rates (Jandorf et al., 2005; Percac- Lima et al., 2008). While primary care and public health both are engaging the community to combat colorectal cancer, there is no formal link between them. Requir- ing a needs assessment as part of the Colorectal Cancer Control Program to identify activities already taking place in the state—similar to the needs as- sessment required by the Home Visiting Program discussed above—would enable states to identify and link with primary care delivery sites, such as health centers, early on. Similarly, encouraging states and tribes to use patient navigators who can link patients to health centers would create an opportunity for partnership. Aligned Leadership Much of CDC’s work on colorectal cancer has been built on the suc- cess of the National Breast and Cervical Cancer Education Program. This program, which began in 1991, has forged many relationships among providers, public health workers, and others. Building on this foundation through the Colorectal Cancer Control Program gives CDC the opportu- nity to leverage these existing relationships, clarifying roles and ensuring accountability. These are key aspects of aligned leadership. A number of groups share the goal of increasing colorectal cancer screening. In addition to health centers, which have strong relationships in the communities in which they work, these groups include state cancer plans, primary care associations, state public health associations, medical
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97 POTENTIAL FOR INTERAGENCY COLLABORATION societies, national cancer centers, and others. No one group can combat colorectal cancer alone. Coordinating these groups and aligning their lead- ership would ensure an integrated approach to colorectal cancer screening. One opportunity for encouraging this coordination is the National Colorec- tal Cancer Roundtable, which includes representatives of federal agencies, advocacy groups, medical groups, and other interested parties. Rather than create a new structure for aligning leadership in this area, HRSA and CDC could work with the roundtable to encourage coordination. Sustainability Funding for the Colorectal Cancer Control Program is available until 2014. The 25 states and 4 tribes selected for this 5-year program frequently run their colorectal cancer screening activities through the state health department, although this is not always the case. Embedding colorectal cancer activities in an existing cancer control program or the state health department will help sustain the program. To have a lasting impact on the incidence of colorectal cancer, however, the delivery of screening services also must be sustainable. With the proposed colorectal cancer screening measure, providers at health centers may have an added incentive to provide screening; if ap- proved, this measure will require them to report their screening rates. Screening rates should be bolstered by the finding of the U.S. Preventive Services Task Force that colorectal cancer screening is a Grade A recom- mendation for those aged 50 to 75 and thus will be covered by all insur- ance expansion under the ACA. Bringing health centers into the Colorectal Cancer Control Program’s activities should provide a sustainable venue for the delivery of screening services. Continuity is particularly important in the context of a screening pro- gram. If colorectal cancer incidence rates are to be reduced, not only must individuals be screened, but in some cases follow-up care with a specialist outside of a health center also will be required. For an enduring impact, relationships must be established and roles clarified. CDC could contribute to meeting this need by requiring that continuity be addressed as part of its Colorectal Cancer Control Program. And HRSA could require that conti- nuity be an integral part of the patient-centered medical home model being adopted by health centers. Data and Analysis Health centers collect and report performance measures through the UDS, which allows them to track their screening rates. As noted above, a new measure on colorectal cancer screening has been proposed and, if
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98 PRIMARY CARE AND PUBLIC HEALTH approved, will be added next year. This could serve to focus health centers on their screening rates. Health center records (either paper or electronic) could become a significant source of data on population screening rates. Some health centers are already using electronic health records, and these records will serve as a mechanism for collecting data on colorectal cancer at the patient level and reporting them to health departments. However, most electronic health records currently are incapable of tracking and reporting population-level data. The development of electronic health records that can track population-level data and the adoption of this technology by health centers should be encouraged. CDC already has created a system for reporting breast cancer screening and outcome data that could be expanded for colorectal cancer. As with cardiovascular disease prevention, the coordination of these two data sys- tems is key to integrating activities in colorectal cancer screening. Potential Actions, Needs, and Barriers CDC is well positioned to assist health centers in meeting the needs of their at-risk populations. Other groups, such as the Colorectal Cancer Roundtable (of which CDC was a founding member), primary care associa- tions, and others can contribute to the work of health centers in increasing the colorectal cancer screening rates of their service populations. Thus, relationships designed to promote colorectal cancer screening should in- volve not only health centers, health departments, HRSA, and CDC, but also other interested groups. The actions outlined below could be taken by HRSA and CDC to integrate their efforts in colorectal cancer screening. Finance One barrier related to finance is that CDC’s funding for the Colorectal Cancer Control Program will end in 2014. There is a need to embed this program’s activities in state health departments or other entities to ensure that the activities will be sustained after the funding ends. Some states have been successful in doing this. CDC should encourage all participating states to move in this direction. As part of the effort to make the program an integral part of state health departments, formal links should be forged with health centers to ensure access to screenings. Health Information Technology Opportunities abound for health centers and health departments to share data related to colorectal cancer screening; however, there are some unmet needs and barriers to realizing these opportunities. Specifically,
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99 POTENTIAL FOR INTERAGENCY COLLABORATION health centers need to be able to track population-level data so it is clear who has been screened and who has not. Health centers and health depart- ments also need to be able to share data on colorectal cancer screening. Currently, there is little coordination between HRSA and CDC with respect to their databases, and this lack of coordination acts as a barrier to integra- tion. The two agencies could coordinate their databases and work jointly to develop new data sets in the future. Policy A potential action that would go a long way toward reducing the incidence of colorectal cancer would be to engage advocacy groups in urging congressional action on coverage for the costs of colorectal cancer treatment. Congress has given states the option to cover breast and cervi- cal cancer treatment through Medicaid, and this model could be applied to colorectal cancer. As noted, with the coverage expansion to take place under the ACA, screening for colorectal cancer will be covered for those aged 50 to 75 because it has received a Grade A recommendation from the U.S. Preventive Services Task Force for this age group. Congressional ac- tion giving states the option to use Medicaid to cover the cost of treatment would enable continuity of care for those with a positive screening. Workforce Education and Training Strengthening the role of patient navigators is a potential action in the area of workforce education and training. Patient navigators offer an op- portunity for integration by linking the community to primary care. These positions could be funded either by health centers or by health departments (or jointly). Another potential action is the creation of materials to inform and support the workforce with respect to colorectal cancer screening. A good example is the toolkit created in North Carolina with the involvement of numerous stakeholders (Rohweder et al., 2011). OPPORTUNITIES FOR INTERAGENCY COLLABORATION In its review of the three areas discussed in this chapter, the committee was struck by both the vastly different organizational structures of HRSA and CDC, which create logistical barriers to the formation of partnerships, and, despite these barriers, the willingness of the two agencies to work together. HRSA is organized into bureaus and operational offices, with each bureau being organized around an aspect of clinical service delivery. There- fore, it is not surprising that HRSA has neither a cardiovascular disease
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100 PRIMARY CARE AND PUBLIC HEALTH program nor a colorectal cancer program (although it does have a Maternal and Child Health Bureau). On the other hand, CDC is organized around diseases and health topics. This structure naturally lends itself to programs on MCH, cardiovascular disease, and colorectal cancer. These structural differences mean there often is no natural link between the agencies. This situation is not necessarily negative. In fact, like puzzle pieces that fit into place, these structural differences can actually further the overall goal of better coordination. Ideally, the two agencies could work in concert with health centers providing care to individuals identified through a CDC pro- gram as having a disease-specific condition but also in need of other care. In the short run, however, the differences can mean that staff from one agency do not always have a natural counterpart in the other. Yet staff from HRSA and CDC do appear to be willing to partner, as do the agencies’ leaders. While jointly sponsoring this report is one indication of this willingness, there are others. In November 2009, for example, HRSA and CDC staff held a 3-day meeting to develop an agenda for working more collaboratively (HRSA, 2010). In October 2011, the two agencies jointly organized a Primary Care/Public Health Forum in Macon, Georgia. The meeting was an opportunity for those working in HRSA-supported primary care clinics and in health departments to become aware of their colleagues’ work and discuss how they could coordinate in the future. And staff of both agencies were generous with their time in meeting with the committee to discuss the three areas covered in this chapter. From the committee’s in-depth examination of the Home Visiting Pro- gram, cardiovascular disease prevention, and colorectal cancer screening, some key points emerged. They include the value of using community health workers, the opportunities provided by data sharing, the potential to use the NHSC and the EIS to create linkages in communities, and the possibility of using a third party to foster integration. Community health workers, including promotores de salud and patient navigators, fill a unique space between primary care practice and public health. As members of the community, they are an integral part of the population and can advance public health initiatives by linking community members to personalized care. They appear to enhance efforts focused on the prevention of cardiovascular disease and colorectal cancer screening and can be used in home visiting programs. In addition, HRSA’s Patient Naviga- tor Outreach and Chronic Disease Prevention Demonstration Program is showing some preliminary positive outcomes (Peplinski et al., 2011). The role of community health workers thus appears to be an element of the workforce discussion that should be further explored and expanded. Opportunities related to data sharing are evident in all three areas. HRSA and CDC collect and analyze large amounts of data, and coordinat- ing these data efforts is a clear means of promoting integration. Finding a
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101 POTENTIAL FOR INTERAGENCY COLLABORATION way to achieve this coordination for specific topics such as MCH would leverage the contributions of each agency while strengthening the overall field, and could provide important benefits to communities and the end us- ers of these databases. One concern is that as data systems move forward, they will not be developed in a way that allows primary care providers to communicate with health departments. HRSA and CDC should work with the Office of the National Coordinator at HHS to encourage health centers and health departments to adopt systems with consistent standards and technology. It is also critical that local communities have access to these data to better understand the health status of the local population and inform policy. CDC, in particular, could play a role in facilitating this access by encouraging state health departments to involve local health departments and health centers in the design of surveillance systems, data hubs, and other data collection activities. The NHSC and the EIS, respectively, are HRSA’s and CDC’s primary workforce programs. The section on cardiovascular disease prevention addresses how these two programs could be engaged jointly to prevent cardiovascular disease, but this joint engagement could occur in any area. With NHSC and EIS officers being situated in communities throughout the country, the potential to combine forces to benefit local populations is significant. By harmonizing these programs, HRSA and CDC could expand the reach of both programs and assist in integration at the community level. Finally, using a third party appears to be a successful strategy for encouraging collaborative efforts. The third party could be an outside group, such as the National Colorectal Cancer Roundtable or the Institute of Medicine, that would bring HRSA and CDC staff together physically around a topic. Alternatively, the third party could be a policy structure such as the National Prevention Strategy, the National Quality Strategy, or the Million Hearts initiative. Such a third party appears to act as a catalyst, encouraging collaboration that might not happen otherwise. For example, HRSA and CDC are working together on the Tobacco Control Strategic Action Plan. Without this plan as a mechanism for sharing information and aligning programs, this collaboration might not be seen as a priority. Staff at both agencies are busy, and finding the time to work together often requires a compelling reason, such as reporting on an initiative. As the two agencies work toward greater collaboration, they may want to seek out opportunities for third parties to bring them together. REFERENCES AAP (American Academy of Pediatrics). 2009. The role of preschool home-visiting programs in improving children’s developmental and health outcomes. Pediatrics 123(2):598-603.
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