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Health and health care disparities related to cancer are a major public health problem in the United States. Providing care that is truly patient-centered could address disparities in cancer screening and follow-up through better alignment between patient needs and health care resources available to address those needs. Key health care reforms offer promise for doing so.
Racial and ethnic minorities, particularly African Americans, have higher death rates from many types of cancer for which death is avoidable, including breast (BC), cervical (CC), and colorectal cancer (CRC).1 Higher incidences of cervical and colorectal cancer among poor and African American patients1 coupled with lower rates of cancer screening contribute to these disparities.2–4 Notably in the U.S., 47% of non-Hispanic Whites are up to date on CRC screening compared with 38% of Blacks.5 This is a classic example of the “inverse care law” whereby those at highest risk (Blacks) are less likely to be screened and treated.6 Disparities in cancer screening contribute to disparities in life expectancy.7 Cancer health disparities are further compounded by greater delays in diagnostic evaluation among minority patients with positive screening tests,8–10 and by suboptimal treatment among poor and minority patients diagnosed with cancer.11–14
In this paper, we first describe the key challenges to addressing racial and socioeconomic disparities in cancer screening and timely follow-up of abnormal screening test results. We then discuss the meaning of patient-centered care in terms of resource alignment, specific resources that are needed to address disparities through patient-centered care, and potential opportunities under health care reform to make this happen.
Patient-centered care became the mantra of health care reform in 2009–10, particularly in primary care.15 Implicit in the notion of patient-centered care is responsiveness to patient needs, preferences, and values.16 This notion suggests the need to align health care resources according to the needs of the patient, including addressing barriers to cancer screening and to ensuring informed patient decision-making. Yet, currently health care resources are poorly aligned with the needs of patients, particularly those who have low incomes and are members of minority groups.16 This mismatch is especially evident in under-resourced safety-net practices. Better alignment of health care resources with patient needs is necessary for eliminating disparities in cancer screening and follow-up. The concept of the Patient-Centered Medical Home (PCMH) reflects the need to re-organize primary care delivery around the needs of the patient rather than physician or practice.15 It provides greater potential than the current delivery model for aligning resources with patient needs.
Low-income patients and members of minority groups are more likely than others to lack adequate health care insurance, and lack of insurance is strongly associated with a lack of cancer screening.17 Latinos and low-income patients are more likely than others to lack any health insurance.18 Under-insurance is also problematic as evidenced by the fact that, in the United States, one of three primary care patients is underinsured, and half of these patients are unable to afford recommended care.19 Furthermore, race, ethnicity, and low income are associated with under-insurance.19 Insurance copayments for cancer prevention tend to discourage care, particularly for low-income patients,20 while patient financial incentives have been shown to be among the most effective strategies for increasing mammography.21
A number of local, state, and national programs have been implemented to support cancer screening for the uninsured and other low-income patients. A prominent example is the Centers for Disease Control and Prevention’s National Breast and Cervical Cancer Early Detection Program (NBCCEDP) and Colorectal Cancer Control Program (CRCCP), intended to address patient financial needs. Since 1991, the NBCCEDP has served more than three million women, paying for more than 7.2 million cancer screening examinations.22 However, this represents only a small portion of uninsured patients in need of screening.23 Despite an increasing number of uninsured patients, the number of screenings through the NBCCEDP declined between 2005 and 200724 (with a slight uptick in 2008). While this gap primarily reflects inadequate funding,25 it may also reflect lack of organized systems within primary care practices for referral of eligible patients to these NBCCEDP and similar programs.
Poor and minority patients also face non-financial barriers to cancer screening. Examples include limited knowledge,26,27 mistrust,28 limited English proficiency (LEP),29 low self efficacy,30–32 low health care literacy,33 and lack of a usual source of primary care.34 Unfortunately, primary care practices, even federally-qualified health centers, are often not sufficiently equipped to recognize and adequately address these problems.35 The basic structure of primary care presents a barrier to cancer screening because virtually all primary care is funneled through rushed 15-minute visits.36 Discussion of cancer screening is often deferred due to competing demands from acute problems.37,38 When cancer screening is discussed, there is often insufficient time for informed decision-making.39 Given the limited amount of face-to-face primary care physician-patient time, an organized approach to cancer screening that includes delegation of appropriate tasks to other team members may help.40,41
The mismatch between patient needs and practice resources is great in practices serving poor and minority patients,42,43 in part due to low private physician reimbursements from Medicaid and limitations in payments to health centers.44,45 This mismatch between patient need and practice resources likely contributes to disparities in health care processes and outcomes.46 Minority and low-income patients experience less partnership in the patient-physician relationship,47 and less discussion of cancer screening48 and cancer treatment than non-minority, affluent patients.49 Many safety-net practices lack adequate health information technology (HIT) and sufficient patient navigators or other practice support personnel to assist with cancer screening activities.42,50 To diminish the disparities in cancer prevention, practices serving low-income and minority patients need these and other resources to better address their patients’ needs.36,41
In summary, the challenges to addressing disparities in cancer screening include (1) disproportionately high prevalence of lack of insurance and under-insurance among poor and minority patients, coupled with high rates of non-financial barriers; and (2) receipt of primary care in under-funded, safety-net practices that suffer from lower reimbursement from payers such as Medicaid, a lack of meaningful HIT to prompt and support providers’ efforts to encourage screening, and most importantly, primary care that is premised almost entirely on brief provider-driven face-to-face visits. (See Box 1.) In this setting, low-intensity interventions (e.g., single mailed reminder) to eligible patients may increase disparities in cancer screening because disadvantaged patients may respond at lower rates than those with more resources.51 The promise of more intensive existing programs to improve cancer screening for low-income and minority patients has not been realized because most patients who could benefit from them are not connected with them.
The passage of health care reforms, particularly the Patient Protection and Affordable Care Act, commonly shortened to the Affordable Care Act (ACA) may enhance resources to address disparities in cancer screening and follow-up by better aligning resources according to patients’ needs. The ACA is a complex bill and some of the key provisions are as yet unfunded. Box 2 highlights the changes needed at various levels (patient, practice, community, research, and training) to address disparities in cancer screening and follow-up; some of the key corresponding health reforms that address these needs; and gaps that are likely to remain.
The ACA is expected to reduce the number of people who are uninsured in the U.S by 32 million.52 In addition, legislation will eliminate patient cost sharing for evidence-based preventive services including breast, cervical and colorectal cancer covered by Medicare and Medicaid. These changes will not entirely eliminate cost barriers to cancer screening, particularly for low-income persons. Examples of common cost barriers include the need to pay annual insurance deductibles before any health care costs are covered, as well as for follow-up diagnostic testing, and treatment. These costs tend to accentuate cancer screening disparities.20 Optimally, payers would exclude cancer follow-up testing from required health plan co-payments and deductibles. Given the complex mix of health care plans in the U.S., it seems unlikely that consensus on this issue will emerge soon. Because as many as 23 million persons will remain uninsured or have gaps in coverage,53 there will be continuing need for programs such as the NBCCEDP to pay for cancer screening for low-income persons, whether they are among the underinsured or the remaining uninsured. The community-based Collaborative Care Network Program may help. It is intended to support local consortiums of health care providers (including health centers) to coordinate and integrate healthcare services -- including outreach, case management, transportation, and expanded health care capacity -- for low-income uninsured as well as underinsured populations. These programs could support establishment of community-wide cancer screening registries analogous to community-wide immunizations registries. They could also fund community outreach workers to contact unscreened patients and those who have have failed to obtain appropriate follow-up testing.
All practices, particularly safety-net practices, require the resources to implement evidence-based approaches to screening promotion and follow-up.21,41 Transformation of primary care from brief face-to-face visits to team-based, organized systems of care provided through a variety of means as envisioned by the PCMH will likely facilitate this process. New forms of funding, through either coordination fees (e.g., patient per month payments) or performance bonuses for cancer screening, offer better means for aligning resources with patient needs than traditional visit-based fees. These payments could help support three specific types of resources needed to address cancer screening and follow-up disparities better: tracking systems, progressively intensive outreach, and patient-centered communication.
Addressing disparities in cancer screening requires the ability to identify patients whose screening status is not up-to-date. Therefore, safety net practices need adequate health information technology (HIT) that supports identification of patients in need of screening in order to facilitate both reaching out to patients and prompting the health care team at the point of care.54 Funding through the American Recovery Re-investment Act of 2009, provides physicians with financial incentives through Medicaid or Medicare for acquiring and engaging in meaningful use of HIT. Adequate HIT requires more than hardware and software; it requires support for personnel who input data, clean it, and use it to improve care including outreach through letters or phone calls (either personal or automated). Incentives for meaningful use could help offset these costs.
The details matter in designing HIT that will actually improve evidence-based practice, including cancer screening. HIT should support population management—particularly outreach to unscreened patients.55 Systems need user-friendly patient registry capabilities in order to do this, and current systems often lack this feature.41,56 Tracking systems should be able to identify patients in need of screening from an entire population of eligible patients seen in the practice and track patients through follow-up of abnormal results.56,57 Linkage to mail merge or automated telephone reminders can reduce work loads.58,59 The system should also facilitate referral to the NBCCEDP or CRCCP for uninsured patients. Where clinician prompts are built into HIT systems, they must be carefully designed, because clinicians may ignore electronic cancer screening alerts, particularly if they believe they are not reliable or if they are confronted daily by too many alerts.60,61
Increasingly intensive outreach helps reach the most marginalized patients. One time telephone or mailed reminders alone may not suffice for all patients nor eliminate disparities in cancer screening due to greater access barriers. 51 Instead, multimodal,21 increasingly intensive outreach by trained staff (e.g., navigators) may be needed,62,63 for unscreened patients who have not yet responded and for patients with abnormal results requiring testing and/or treatment. This outreach could be supported by Collaborative Care Network programs or through additional payments streams for PCMHs, e.g. care coordination fees or performance bonuses for improved cancer screening and follow-up.
Safety-net practices specifically require changes in reimbursement (e.g., alternatives/supplements to visit-based payments) and training to support team-based approaches to cancer screening, including use of patient navigators/community health workers for outreach and education.36 A progressively intensive approach (e.g., point-of-care prompts, letters, personal phone calls, and -- as a last resort -- home visits) using community health workers has been shown to virtually eliminate community wide disparities in childhood immunizations.64 A similar approach involving creation of registry and use of navigators has been used to eliminate disparities in completed oncology consultations for breast cancer.65
Once patients in need of screening have been identified, contacting these patients and delivering an effective message that promotes screening behavior is the next challenge. Tailored or personalized reminders that communicate to the patient when s/he was last screened appear to be most effective, particularly when coupled with physician recommendation for screening.66–69
Cancer screening decision-making requires consideration of benefits (e.g., early cancer detection and/or prevention) and risks, (e.g., the discomfort and costs of screening, risk for false positives, and complications associated with treatment) in the context of patient preferences, values, and health literacy. Informed patient decision-making is facilitated by adequate time, establishment of trusting relationship, clear explanations, elicitation of patient values and preferences, and confirmation of understanding using principles of patient-centered communication and cultural competency.70,71 Motivational interviewing72 can be helpful particularly if patients’ screening preferences are considered.73 Matching colorectal cancer screening modality (e.g., colonoscopy, home testing kit) to patients’ screening preference increases screening rates.74 Adequate time, training, and culturally competent staff are needed for these discussions.71,75 Potentially, these discussions could be delegated to appropriately trained nurses. Payment reforms may facilitate these innovations by shifting care from time-pressured visits packed with too many tasks provided exclusively by clinicians (under fee-for-service visits) to care provided by different team members through a range of modalities (e.g., phone, mail, email, text, home visits).
Health care reform, particularly ACA, ushers in substantially more funding for community health centers, potentially doubling the number of patients served. In addition, support through the Prevention and Public Health Fund will promote integration of primary care services into publicly-funded community-based behavioral health settings, and bolster local, state and tribal public health infrastructure, possibly improving opportunities to screen and treat hard-to-reach patients for cancer.
The ACA will provide bonus payments to primary care physicians under Medicare (with additional bonuses for primary care physicians working in professional shortage areas). It also eliminates differences in payments between Medicaid and Medicare for primary care. This may begin to minimize disparities in resources between primary care practices whose patient populations differ widely by social disadvantage.
Optimally, future payment reform would direct more resources to practices that serve groups with high needs, (e.g., high rates of poverty, low health literacy, low English proficiency).76 Potential strategies include expanded federal funding for enabling services from such personnel as community health workers, patient navigators, and interpreters, and development of separate billing codes for these services.36,77 As payers move towards bundled payments, it will be critical that such payments not only account for case-mixes based on traditional measures of medical morbidity, but also based on social risk.78
Health information technologies (HIT)—including electronic medical records that are truly useful to clinicians—are central to primary care79–81 and improved cancer screening.82 The combination of federal HIT leadership, subsidies for HIT, and physician bonuses for meaningful use may accelerate HIT adoption in primary care.83,84 However, several additional challenges must be addressed if HIT is to substantively improve cancer screening and reduce disparities.84 Specifically, commercially available HIT systems must be designed to minimize clinician and staff workload while promoting clinical decision support and population management (e.g., registry functions).85 Hand-held electronic devices are becoming increasingly user-friendly, and HIT systems for primary care should be as easy to use as these. Ease of use includes minimization of manual data entry. For example, systems must have the capability of electronically importing and sorting screening data. Connectivity between systems is of central importance. Normal results should trigger future prompts at the appropriate intervals. Abnormal results should trigger alerts and tracking systems until care is completed. Systems should contain sufficient data to provide tailored reminders to patients.86 In addition, incentives for cancer screening and/or documentation of informed cancer decision-making are needed to promote meaningful use of HIT.
Health care reform takes small steps towards creation of PCMHs.87 The PCMH concept is intended to provide key infrastructure such as (a) payment reforms necessary to support new care models that include optimal use of HIT, (b) team-based care, and (c) implementation of evidence-based approaches to screening promotion.15,21 These elements are related. For example, new payment models could create opportunities to implement team-based care. Health care teams offer promise for improvement in efficiency while also increasing diversity and cultural competency, and time spent with patients.88,89 Reimbursement under PCMH should take into account patient needs when establishing per patient payments.15 This could help better align practice resources with patient needs and facilitate implementation of organized systems for cancer screening and follow-up. Health reform begins this process by providing States with the option of enrolling Medicaid beneficiaries with chronic conditions and those enrolling in health insurance exchanges into a health homes designed to facilitate care coordination. In addition, in 2011 some States will begin providing primary care practices with bonus Medicaid payments based on PCMH criteria established through the National Commission on Quality Assurance (NCAQ).90
Current NCQA PMCH criteria require documentation of systematic tracking of test results, and abnormal results and referrals. Proposed NCQA criteria for 2011 would likely further facilitate cancer screening and follow-up for underserved patients. These include requirements for culturally linguistically appropriate services, organized systems of care (e.g., standing orders for preventive care, delegation of tasks within care team, care team training to communicate with vulnerable patients), searchable data (including cancer screening), use of data for population management (including cancer screening), use of systems to track referrals to community services (e.g., NBCCEDP), and quality improvement including setting goals and taking action to improve care to vulnerable populations.91 Thus, expansion in the number of states offering Medicaid bonuses for establishment of PCMH could have a significant impact over time in disparities in cancer screening and follow-up.
The NIH Director, Francis Collins, has made research related to health care reform a high priority.92 Optimally, this would include research needed to guide implementation of the PCMH, including research related to improving cancer screening in primary care practices.41
The ACA increases funding for training in primary care sites, including federally-qualified health centers. Effective implementation of the PCMH requires new training models for both medical undergraduate and graduate education, in addition to training for community physicians, particularly those working in underserved practices. Currently, medical school and residency program primary care training is constrained by fee-for-service payment for 15-minute face-to-face visits.36 There is an urgent need to motivate medical schools to develop new care models, particularly team-based delivery of preventive care including cancer screening.41 There is also need for training community clinicians currently in practice.83 Promising examples include the Health Disparities Collaborative sponsored by the Health Resources Services Administration and the cooperative extension service model that fosters community learning collaboratives.83,93
There is mounting evidence of the need for and value of organized approaches to cancer screening (e.g., use of registries to identify unscreened patients, delegation of tasks, outreach through letters and/or phone, point of care reminders);94 organized approaches are critical to addressing disparities in cancer screening and follow-up.95,96 The central barriers to implementing these evidence-based interventions are lack of resources, particularly in practices that serve poor and minority patients, but also a need for redesign of primary care away from exclusively visit-based care and towards team-based care.42,97,98
Health care reform—whether radical or incremental—extends the possibility of improved coverage for the uninsured, diffusion of HIT into primary care practices, small steps towards the PCMH, funding for relevant research and training, and potentially greater resources for safety net providers. Each of these could help in better aligning resources according to patients’ needs. The extent to which health care reform succeeds in doing so may determine how successfully disparities in cancer screening and follow-up are reduced.
American Cancer Society (RSGT-08-077-01) and National Cancer Institute/NIH (NCI/NIH U01CA116924-01). We thank Adjuah van Keken for assistance in preparing this manuscript.
None of the authors report any financial interest in matters covered in this paper.