March 2018 Patient Navigators and Breast Cancer Care: Policy Solutions to Help Survivors Access California’s Complex System of Care AJ Scheitler, Riti Shimkhada, Michelle Ko, Beth Glenn, and Ninez Ponce SUMMARY: Breast cancer patients benefit from navigation services to aid in coordination of the full spectrum of care. Insurance companies and the health care system can take steps to provide navigation services. State agencies can develop a repository of services for breast cancer patients that providers and health systems can access to assist patients. any women fighting breast cancer This fact sheet presents findings on pa- M in California encounter fragment- tient navigation services and recommends ed care as they navigate the complex policy solutions that could improve survi- health system with multiple providers, vors’ understanding of, and access to, insurance requirements and restrictions, breast cancer care. and valuable support services. Some women benefit greatly from the services Patient navigation shows promise and of a patient navigator who is tasked with merits further study. helping the patient identify providers, Patient navigation is “an individualized schedule appointments, understand insur- assistance provided to patients through ance coverage for various tests and treat- the cancer care continuum to navigate the ments, and connect to support services. complex health care system.”1 There is However, a woman’s access to a navigator considerable variation in the types of nav- is dependent on whether or not her igation programs offered to cancer pa- health insurance, health care provider, or tients. Navigation programs provide local health system provides the service. different kinds of support, ranging from emotional to logistical to informational. As part of a joint study by the UCLA Cen- Navigation programs may employ individ- ter for Health Policy Research and the uals of various educational backgrounds UCLA Center for Cancer Prevention and and training, ranging from health care Control Research, investigators conducted professionals, such as nurses, to commu- two rounds of interviews with patient ed- nity health workers and to lay staff offer- ucators and advocates, health care pro- ing peer experience and support.2,3 viders and social workers about their Largely because of this variation, it has knowledge of the patient experience in been challenging for researchers to evalu- California for women with a breast cancer ate the impact of navigation on patient diagnosis. outcomes. 2 A systematic review published in 2016 Addressing Barriers to examined 13 experimental and quasi- Breast Cancer Care in California: experimental studies of breast cancer Levers for Policy Change treatment and/or survivorship patient 4 navigation programs. Results from this In 2018, over 29,000 women will be diag- review suggest that patient navigation nosed with breast cancer in California, and appears to be effective in improving can- an estimated 4,500 will die of the disease.5 cer surveillance through mammography Yet, uninsured and underinsured breast screening rates, but there was no con- cancer patients continue to face delayed sistent evidence of patient navigation im- and restricted access to life-saving, life- pact on improved treatment and survivor- extending treatments and to services that ship outcomes. A recent study (not includ- enhance quality of life. ed in the systematic review) conducted in a public hospital system in New York City The findings contained in this fact sheet found that a patient navigation program are drawn from a two-year study by the positively impacted receipt of timely care UCLA Center for Health Policy Research and improved compliance with adjuvant 5 and the UCLA Center for Cancer Preven- therapy for breast cancer. tion and Control Researchon the barriers to breast cancer care in California. Specifi- There are a number of ongoing studies cally, the researchers identified five major that, once completed, will likely shed obstacles facing survivors: Health System more light on the effectiveness of naviga- Fragmentation/Navigation; Insurance and tion programs. It also remains unclear Health Benefits; Cost; Individual and Cul- as to whether patient navigation is cost- tural Characteristics; and Language/Health effective in improving outcomes in breast Literacy. cancer treatment and survivorship. Similar to the state of the effectiveness research, The study also found that while barriers more studies examining the cost- varied by insurance status — from public effectiveness of patient navigation will be programs to Covered California to private crucial to the field. A recent study on group insurance — no group was immune health care spending and resource use from challenges in every category. among geriatric patients with cancer (not limited to breast cancer) suggests there are cost savings among navigated patients Read the full report: compared to non-navigated patients.6,7 http://healthpolicy.ucla.edu/ breastcancer2018 Navigation should not stop at the hospital door. Overall, study participants reported that In a series of interviews for the joint UCLA navigation programs varied in the range study, participants asserted that well-run of services offered as well as the quality of navigation programs were valuable in services provided. There was consensus helping women succeed in moving that navigation cannot stop at the hospi- through the complex process of receiving tal doors and must extend to support ser- high-quality breast cancer care. Interview vices in the community. Respondents felt respondents conveyed numerous patient strongly that navigators should: experiences demonstrating the need for navigators. More than one acknowledged • Assist with schedule coordination to that their organization was not explicitly help ensure timely delivery of services. tasked with navigation services but often • Interact with patients enrolling in new ended up playing this role for patients. programs to aid in timely follow-through 3 on paperwork, as necessary. Lack of fol- Author Information low-through could force changes in insur- AJ Scheitler, EdD, is the director of stakehold- ance, impacting care. er relations at the UCLA Center for Health Poli- • Help interpret technical medical cy Research. Riti Shimkhada, MPH, PhD, is a terms as common language to explain the public administration analyst at the UCLA Cen- ter for Health Policy Research. Michelle Ko, diagnosis and treatment options, enabling MD, PhD, is an assistant professor at the UC the patient to make more informed deci- Davis School of Medicine. Beth Glenn, PhD, is sions about care. an associate professor at the UCLA Fielding • Be available to all women, regardless School of Public Health, Department of Health of insurance status; some women who Policy and Management. Ninez Ponce, MPP, have insurance could use assistance navi- PhD, is a professor at the UCLA Fielding School gating a complex health system. of Public Health and an associate director of • Have a repository of resources for the UCLA Center for Health Policy Research. referral to support services. Often, provid- Suggested Citation ers and their staff are unaware of outside Scheitler A, Shimkhada R, Ko M, Glenn B, programs. Ponce N. 2018. Patient Navigators and Breast Cancer Care: Policy Solution to Help Survivors Recommendations Access California’s Complex System of Care. Key informant interviews, along with the Los Angeles, CA: UCLA Center for Health Policy state of the evidence, shed light on how Research. the health care system may use patient navigators in helping patients move be- Endnotes tween steps along the breast cancer care 1. Hopkins J, Mumber MP. 2009. Patient Navigation Through the Cancer Care Continuum: An Overview. continuum. The following recommenda- Journal of Oncology Practice 5:150-2. tions to policymakers are those identified 2. Wells KJ, Battaglia TA, Dudley DJ, Garcia R, as priority areas to address the barriers Greene A, Calhoun E, Raich PC. 2008. Patient Navi- that remain in navigating breast cancer gation: State of the Art or Is It Science? Cancer 113 care: (8), 1999-2010. doi:10.1002/cncr.23815 3. Wells KJ, Valverde P, Ustjanauskas AE, Calhoun Provide reimbursement for patient EA, Risendal BC. 2017. What Are Patient Navigators navigation services, especially in pri- Doing, for Whom, and Where? A National Survey vate health plans that currently lack Evaluating the Types of Services Provided by Pa- these services. tient Navigators. Patient Education and Counseling. doi:10.1016/j.pec.2017.08.017 Establish quality standards for patient 4. Baik SH, Gallo LC, Wells KJ. 2016. Patient Naviga- navigation programs in cancer care. tion in Breast Cancer Treatment and Survivorship: A Expand existing screening and preven- Systematic Review. Journal of Clinical Oncology. doi:10.1200/jco.2016.67.5454 Read this publication tion programs to educate women di- 5. Castaldi M, Safadjou S, Elrafei T, McNelis J. 2017. online agnosed with breast cancer on pa- A Multidisciplinary Patient Navigation Program FS2018-8 tient navigation, including what the Improves Compliance with Adjuvant Breast Cancer role of a navigator is, what services Therapy in a Public Hospital. American Journal of are included, and how to obtain navi- Medical Quality 32(4): 406-413. doi:10.1177/ 1062860616656250 gation services. 6. Rocque GB, Pisu M, Jackson BE, et al. 2017. Re- Copyright © 2018 by the Support the development of a source Use and Medicare Costs During Lay Naviga- Regents of the repository of informationon health tion for Geriatric Patients with Cancer. JAMA Oncol- ogy 3:817-25. University of California. care service providers and support ser- 7. Rocque GB, Williams CP, Jones MI, et al. 2017. All rights reserved. vices that can be locally tailored and Healthcare Utilization, Medicare Spending, and available to providers and navigators. Sources of Patient Distress Identified During Imple- • Improve system integration and co- mentation of a Lay Navigation Program for Older location of services, including connec- Patients with Breast Cancer. Breast Cancer Re- search and Treatment. Doi: 10.1007/s10549-017- tions to, and financial support for, so- 4498-8 cial services. .