Stand Against Cancer: Evaluating a Breast and Cervical Cancer Screening Program for Uninsured Patients

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1 Stand Against Cancer: Evaluating a Breast and Cervical Cancer Screening Program for Uninsured Patients Milton Mickey Eder, Charles Firke Progress in Community Health Partnerships: Research, Education, and Action, Volume 9, Issue 1, Spring 2015, pp (Article) Published by Johns Hopkins University Press DOI: For additional information about this article Accessed 11 Jan :47 GMT

2 Theory and Methods 129 Stand Against Cancer: Evaluating a Breast and Cervical Cancer Screening Program for Uninsured Patients Milton Mickey Eder, PhD 1,2, Charles Firke 2 (1) Department of Family Medicine and Community Health, University of Minnesota; (2) Formerly at Access Community Health Network Submitted 19 March 2013, revised 25 August 2013, accepted 10 October Abstract Background: Stand Against Cancer (SAC) is a long-running, community-based, organization-led program that addresses breast and cervical cancer disparities. Managed by Access Community Health Network (ACCESS), ongoing program evaluation reports on program performance over 5 years and public health implications. Objectives: To reduce disparities by making free cancer screening readily accessible to uninsured women and by connecting women to nurse case management to resolve abnormal screening results. Evaluation supports program management by assessing operations and outcomes. Methods: Health center staff completes patient applications that start the clock to achieve a resolution for all women who screen. All women with abnormal screens are referred to nurse case management and entered into a database for tracking. Program evaluation tracks the extent to which the predominantly minority women successfully reach resolution points, specifically the return of screening results and diagnostic resolution of abnormal results, including initiation of treatment. Results: A 5-year average of 10,400 women received SACsupported screening at ACCESS. Through nurse case management, 90% of patients with abnormal screening results received a diagnosis. Women increasingly return and screen in subsequent years, contributing to a lower rate of late-stage cancers. Uninsured patients receiving SAC screening made additional nonscreening visits. Evaluation determined that SAC participant outcomes approximate or exceed a comparable national cohort and that program outcomes demonstrate effectiveness, equity, and optimality. Conclusions: Annual SAC evaluation illustrates that removing access barriers and providing nurse case management support to patients with abnormal results produced nondisparate outcomes for uninsured women. Keywords Community health partnerships, health disparities, health care quality, access, and evaluation, program evaluation, preventive health services Chicago is notorious for the racial disparity in breast cancer death rates. In 2005 in Chicago, African American women died at more than twice the rate of Whites (41 per 100,000 compared with 19). 1 The incidence of cervical cancer also shows racial disparities; in 2009 in Illinois, the rate of cervical cancer among Hispanic women was 10 per 100,000; for African Americans 14 per 100,000; and for non-hispanic Whites 7 per 100, Other confounding variables contribute to the disparity in health outcomes, including access to care. From 2005 to 2010, the Metropolitan Chicago Healthcare Council estimated that more than one in four Chicago residents were uninsured. 3 Currently in Illinois, about 20% of nonelderly adult African Americans and 29% of Hispanics lack health insurance. 4 Uninsured women are half as likely to have had a recent mammogram as women with private insurance and about 40% as likely to have had a Pap test in the last year. 5 In 2002, leaders of ACCESS met with the Illinois guber- pchp.press.jhu.edu 2015 The Johns Hopkins University Press

3 130 natorial candidates to secure their pledge to do something for uninsured women. The winner was particularly sympathetic and took aggressive steps to increase access to care in Illinois. The effort among low-income, uninsured, and racial and ethnic minorities in Chicago to improve health care led to the creation of SAC, a primary care based cancer screening for low-income women. The name SAC started as a joke in response to the marches, walks, and runs against cancer; now the name also points to the enduring nature of the program. SAC provides financial support for Federally Qualified Health Centers (FQHCs) operating within communities with low rates of health insurance to enroll and screen women for breast and cervical cancer and to connect patients with nurse case management services to support them through resolution of abnormal screening results. The program takes a population health approach by operating across a metropolitan region and sharing nurse case management support among offices and organizations. Evaluation facilitates an examination of the relationship between a system of medical care, patient health outcomes, and the organization of SAC clinical services. Overview ACCESS, a large network of FQHCs, has served as the primary agency operating the SAC program in the Chicago metropolitan area from its inception in The ACCESS Cook County sites organize SAC screening for eligible patients and referrals to nurse case management for all abnormal results, operating from available health center space. SAC stakeholders and community partners for the period of this report include the Illinois Department of Public Health, which funds SAC and establishes screening, treatment, and reporting criteria; four houses of worship that hold education and awareness sessions about breast and cervical cancer screening; six other Chicago-area FQHCs that subcontract support for screening services, including one serving primarily lesbian patients; and Mount Sinai Hospital, which provides screening mammograms and processes patient specimens in performing the majority of diagnostic tests. In addition, ACCESS s research and evaluation department, housed at the corporate office near Chicago s Loop, manages program data and provides feedback to program management. ACCESS is committed to serving patients through SAC and does so even after program funds have all been expended. SAC program goals include helping low-income women to build habits that promote health, similar to those wealthier and insured patients demonstrate. Many FQHC patients say no to preventive services such as flu shots, and more so to mammograms or colonoscopies, which involve high out-ofpocket costs for uninsured patients. Cancer screening largely is a behavior of advantaged people because the costs are high and benefits relatively infrequent the odds may be 1 in 100, 6 say, that a test finds cancer; patients then need time and money or insurance to receive treatment. SAC builds on the Illinois Breast and Cervical Cancer Program, which is similar to programs found in the 50 states, by financially supporting clinical services for low-income uninsured women. For example, Indiana has 6.5 million residents, and the Indiana Breast and Cervical Cancer Program serves 6,000 to 7,000 patients per year. Chicago has 2.7 million residents, and SAC serves more than 10,000 unique patients each year. SAC has wider eligibility than Illinois Breast and Cervical Cancer Program, which means that some women screen without a guaranteed source of support for diagnostic resolution or treatment. However, access to preventive screenings is helping to form continuing relationships. SAC makes it easy for women to start with free screening and hard to quit; nurse case managers keep after patients through diagnosis and treatment. SAC also depends on health center staff working with women to complete a seven-page application, which might be less likely to occur if reimbursement was at the private payment rate rather than an enhanced FQHC payment rate or if offices lacked the infrastructure developed to support SAC; for example, SAC nurse case management staff hold monthly enrollment trainings. Although the number of program participants can produce administrative burdens in some offices, it can also facilitate efficiencies through the development of routine workflows. The 39 ACCESS sites enrolled from 1 to 1,101 women in SAC in FY12 (median, 150 visits). Nurse case management also augments the office staff capacity for patient management. Methods Assessing participant transitions within a continuity-ofcare model comprises key program metrics. SAC program guidelines hold that screening is concluded successfully only when the participant receives a definitive diagnosis. For all Progress in Community Health Partnerships: Research, Education, and Action Spring 2015 vol 9.1

4 screenings requiring follow-up, nurse case managers track participant progress to at least initiation of treatment. Review of data on patient progress occurs regularly by an evaluator in close proximity to the case management monitoring function to provide optimal feedback on the program operations and contribute to performance improvement. Data are collected on participants enrolled, types of screening by participant, number of indeterminate/abnormal results, number of abnormal results resolved, number of abnormal resolved within 60 days of result returned, number of precancers/cancer identified, and number of women in treatment. Reports to the state require aggregation of data by the 10th of the following month and include the number of office visits, and breast and cervical screenings. Since 2010, reports have included race and ethnicity information (Figure 1). Challenges to obtaining accurate data have existed from the program s beginning. Initially, ACCESS relied on administrative data, which were managed by a hospital partner. Given that FQHCs receive the enhanced Medicaid rate and collect the same amount per encounter no matter the level of care, billing data were inadequate. Refinement to data collection began with entering unused or dummy codes on the paper encounter sheet for tracking. However, clinical staff at sites did not use the codes consistently; for example, codes for education/counseling for breast and cervical cancer screening were also used for actual clinical breast and pelvic examinations; at some sites 10-, 15-, and 20-minute visit codes corresponded with a breast examination, pelvic examination, or both. Electronic health record (EHR) implementation required close monitoring. For example, the first centers to use an EHR produced a monthly count of SAC visits at nearly zero. However, medical assistants at those centers insisted that there 131 Figure 1. Continuity of Care: From Screening to Diagnosis (Reporting 5-Year Program Averages) Eder & Firke Stand Against Cancer

5 132 were a normal number of SAC visits, but that EHR configuration made reporting on SAC unwieldy. In response, the payer box for SAC was aligned with the medical assistant workflow; site counts then approximated previous reports. One strength of SAC data collection is that the people closest to the program provide the key data. For example, medical assistants initially specified a SAC visit on the encounter form and now do so in the EHR during registration; data are rarely derived from provider notes. Monthly reports from partner FQHCs parallel ACCESS data collection for clinical examinations. The EHR has made tracking Pap test results much easier. SAC patients receiving screening mammograms are indicated on a list provided by a partner (safety net) hospital. Case managers track assigned patients and their next tests in a table that contains records of all patients referred for case management. Given the limits of our data, we assume that every abnormal screening result is forwarded to the case management unit. The evaluation unit receives reports from nurse case management and ACCESS s Information Services Department. After reviewing and validating the reports, which typically involves sampling and comparing program reports to the patient s medical record, reports from all partners are aggregated. Reports to the state require aggregation of data by the 10th of the following month and include the number of office visits, and breast and cervical screenings. Since 2010, reports have included race and ethnicity information. Because data from state-funded programs are a matter of public record within the limits of the Freedom of Information Act and because only de-identified and aggregated data reported to the state were analyzed for this evaluation report, approval was not sought from an institutional review board. The evaluation reviewed retrospectively data reporting on participant progress through SAC supported services. Findings SAC data contain detailed information about thousands of patients over 5 years from first visit to diagnosis. We are familiar with the limits of these data, knowing at what level the various elements can be analyzed. Five-year averages for SAC activities include about 15,000 total visits, which provides patients 3,000 mammograms, 8,000 clinical breast examinations, and 9,000 cervical examinations/pap tests (a visit may include more than one test). Those screenings return on average 2,000 abnormal results, which yield about 35 breast cancers, 40 cervical precancers, and 4 cervical cancers. Although evaluation resources were insufficient to compare SAC access with breast and cervical cancer screening for all minority women in Chicago, SAC participants consistently completed screening with a lost-to-follow-up rate of less than 10%; the SAC rate far surpasses a study of follow-up on critical abnormal mammography results across all ACCESS patients. 7 Participants also demonstrated improved screening outcomes over time (Figure 2). With stage 0 and 1 cancers smaller and local, and stage 2 and 3 larger and having spread farther, 8 SAC program participants from fiscal 2008/2009 had three times of the more advanced cancers as the least (2.9 to 1). In fiscal 2010/2011, the ratio of severe outcomes decreased by half (1.5 to 1). In Figure 2, earlier-stage cancers rose from 25% to 41% of the total. Figure 2. Number of Cancers Identified and Diagnostic Stage Progress in Community Health Partnerships: Research, Education, and Action Spring 2015 vol 9.1

6 Discussion Donabedian s tripartite model of quality, involving structure, process, and outcomes organizes this evaluation. Although the program addresses access to care for individuals confronted by similar social determinants of health, the evaluation examines process and outcomes issues by assessing participant progress through screening and resolution of abnormal screening results. 9 SAC evaluation data provides insight into three aspects of quality in the relationship between the science and technology of health care and its application effectiveness, equity, and optimality. 9 Because this public health program involves collaboration and variation over time in which data reported were not uniform within or between organizations over all 5 years, the evaluation uses 5-year averages. Evaluation data provide ample indication of program effectiveness or the degree to which attainable improvement in health care are, in fact, attained. 5 9 With an average of 15,000 visits and 20,000 screening tests for uninsured minority women, the program engages its intended target population, annually providing services in excess of available funds. SAC program effectiveness is also indicated by the less than 10% annual loss to follow-up for women with abnormal screening results. SAC also demonstrates effectiveness as a preventive health program with 45% of women repeating a screening mammogram within 2 years, a percentage that has remained constant even as the number of patients receiving a mammogram increased almost 20% per year. Before this 5-year period SAC realized a near doubling of percentage returning for any screening, which went from 13% in fiscal 2006/2007 to 23% in fiscal 2008/2009, the only years for which these data can be reliably compared for all program participants. In terms of connecting to primary care for other health needs, new SAC participants are more likely to return to ACCESS for a self-pay visit the year after participating in SAC than are other first-time self-pay patients about 50% compared with 40%. The low loss-to-follow-up rate for women with abnormal results suggests an increasingly responsive health care system that eliminates individual and community uncertainty and adverse psychological response. This may contribute to SAC program participants increase in primary care visits with real out-of-pocket expense compared with other uninsured women. Engagement with primary care potentially points to an area where individual responses to social determinants diverge. Unfortunately, national or state breast and cervical cancer programs do not readily report on patient-centered issues like lost-to-follow-up or severity of cancer diagnosis. However, the distribution of health care and its benefits among SAC participants demonstrates an increasing equality of outcomes. 10 Considerations of optimality or how improvements in health relate to cost is examined in terms of the cost of screening and of resolving abnormal screenings. With two types of screening supported, optimizing costs would theoretically combine both screenings in one visit. However, variation in recommended screening frequency owing to participant age and medical history make this an inaccurate assumption. Aggregate data suggest every participant screens twice every 1.5 visits; however, with follow-up visits required for many of the 2,000 abnormal results, the data are not granular enough to report reliably on screening per visit. However, given what is known about prevention, early diagnosis and treatment of cancer, the SAC program seems to positively balance improvements in health with cost (optimality). The low lost-to-follow-up rate is a potential contributor to optimality. 11 Preventing women from delaying screening or diagnosis that allows disease burden to increase is another. For example, if 10 breast cancers went undiagnosed and the individual patients entered the health care system at the next later stage, then the additional costs of treatment according to Medicaid cost projections for those women is estimated at $200,000 to $400,000. Nurse case management fulfills an important role within SAC s low socioeconomic population, providing patients ongoing access to clinical expertise, support, and encouragement. The incorporation of nurse case management, as distinct from community health workers or lay navigators, within one local FQHC health system contributes to program effectiveness and equity of results, while suggesting that the cost of these services are more than offset by obviating clinical services and improved public health. Limitations SAC is a public health program that has maintained consistent clinical guidelines. However, unlike most research projects, this evaluation reports on a program with annual funding uncertainty, with changes within and among collaborating organizations, changes in health center staff and 133 Eder & Firke Stand Against Cancer

7 134 their awareness of the program, and in public information about frequency of screening by the United States Preventive Services Task Force. 12 This evaluation report describes the key metrics used to assess partner and program performance and to update and support program management. Evaluation additionally considered other metrics like referrals from outreach or call-back rates (calculated as the rate of abnormal results per type of screening test), but more detailed issues were not consistently monitored over the 5 years. Estimating only the costs of medical services avoided through early detection, while difficult to quantify without a randomized trial or clear comparison group, fails to consider benefits to social and family cohesion that are important to patients and other stakeholders. It is also difficult to quantify behavior changes in participants engagement with the healthcare system, particularly given the data currently collected. Although public health programs can target access barriers, particularly for mammography among low socioeconomic status and uninsured women, 13 analysis indicates that there is insufficient capacity to provide screening mammograms to all Chicago women for whom it is indicated. 14 Although this evaluation indicates the SAC program successfully addresses challenges within the current healthcare system, it is unclear how implementation of the Affordable Care Act will expand the health system s capacity to provide cancer screening services for all women and in particular those utilizing community health centers. Although evaluation suggests that the support provided by the nurse case management unit is principally responsible for the success of this prevention program, maintaining the distinction between research and evaluation precluded obtaining feedback directly from program participants. In conclusion, SAC was established to address cancer health disparities among uninsured women through a comprehensive approach to screening and diagnosis. Although organizations participating in SAC have changed, the SAC program has maintained operational integrity and reliability from the patient perspective. The analysis put forward utilized 5-year averages to address organizational changes and data reliability. From a public health perspective, organizing a shared resource to serve community needs in the form of the nurse case management unit is shown to facilitate consistently positive health outcomes. References 1. Hirschman J, Whitman S, Ansell D. The Black:White disparity in breast cancer mortality: The example of Chicago. Cancer Causes Control. 2007;18: Illinois Department of Public Health, Illinois State Cancer Registry. Public Dataset as of November Available from: 3. Metropolitan Chicago Healthcare Council. Effects of the recession on Illinois [cited 2013 Jul 27]. Available from: whitepapers.mchc.com/july 2012/effects-of-the-recessionon-illinois/ 4. Kaiser Family Foundation. State health facts [cited 2013 Aug 15]. Available from: disstribution-by-raceethnicity 2 5. National Center for Health Statistics National Health Interview Survey (NHIS) public use data release: NHIS survey description [cited 2012 Jan 19]. Hyattsville (MD): US Department of Health and Human Services, CDC, National Center for Health Statistics; Available from: ftp://ftp.cdc.gov/pub/health_statistics/nchs/dataset_documentation /nhis/2010/srvydesc.pdf 6. National Breast and Cervical Early Detection Program National Report. Available from: /cancer/nbccedp/pdf/national_rpt.pdf 7. Chen ET, Eder M, Elder NC, Hickner J. Crossing the finish line: Follow-up of abnormal test results in a multi-site community health center. J Natl Med Assoc Aug;102(8): National Cancer Institute Fact Sheet [cited 2013 Aug 15]. Available from: /detection/staging/ 9. Donabedian A. An introduction to quality assurance in health care. Oxford: Oxford University Press; Kindig D, Stoddart G. What is Population Health? Am J Public Health Mar;93(3): Kerner JF, Yedidia M, Padgett D, Muth B, Washington KS, Tefft M, et al. Realizing the promise of breast cancer screening: clinical follow-up after abnormal screening among black women. Am J Prev Med. 2003;37: U.S. Preventive Services Task Force Screening for Breast Cancer [cited 2013 Aug 18]. Available from: Peek ME, Han JH. Disparities in screening mammography: current status, interventions, and implications. J Gen Intern Med. 2004;19(2): Allgood KL, Rauscher GH, Whitman S. Screening mammography need, utilization and capacity in Chicago: can we fulfill our mission and our promises? In: Uchiyama N, Zanchetta do Nascimento, editors. Mammography Recent advances. Rijeka (Croatia): Intech; Available from: /screening-mammography-need-utilizationand-capacity-inchicago-can-we-fulfill-our-mission-and-our-promises Progress in Community Health Partnerships: Research, Education, and Action Spring 2015 vol 9.1