Richard G Stefanacci: The Access Group, Berkeley Heights, NJ.
Harold Freeman: Global Council of Alzheimers Disease (GCAD); Ralph Lauren Center for Cancer Care, New York, NY.
Ruth Gay: Global Council of Alzheimers Disease (GCAD); Alzheimer’s Association, Northern California and Northern Nevada Chapter, San Jose, CA.
Mary Michael: Global Council of Alzheimers Disease (GCAD); Otsuka America Pharmaceutical, Inc, Rockville, MD.
David Digby: Global Council of Alzheimers Disease (GCAD); Otsuka America Pharmaceutical, Inc, Rockville, MD.
The Global Council on Alzheimer’s Disease and Otsuka America Pharmaceutical, Inc. provided financial and administrative support for this article. Dr Stefanacci is a paid consultant to Otsuka.
Patient navigation has proven capable of both improving health outcomes and decreasing costs to the health care system. Although the use of patient navigation in the context of cancer care has been described previously, there are opportunities to apply these same valuable principles beyond oncology to such disease states as Alzheimer’s disease (AD). The authors explore how incorporating the role of patient navigators into AD clinical pathways can result in improved outcomes for patients.
The patient navigation movement started more than 15 years ago when the President’s Cancer Panel submitted to President George W Bush a report entitled “Voices of a Broken System: Real People, Real Problems.”1 In this report, the authors asserted that, despite “profound advances” in cancer research: “[O]ur health care delivery system is broken. It is the root of vast and unnecessary suffering, personal financial ruin, and loss of dignity for millions of people with cancer, who must fight their way into and through a dysfunctional system even as they struggle to save their very lives.”1
One core solution to fixing this “dysfunctional system” was patient navigation. By creating patient navigators to help patients and families, this “patient-centric concept concentrates on the movement of patients along the continuum of medical care…beginning in the community and continuing on through testing, diagnosis, and survivorship to the end of life.”2
The Role of Patient Navigation in Improving the Value of Oncology Care
Patient-Reported Web Survey Improves Outcomes, Study Says
In the years since, patient navigation has proven capable of both improving health outcomes and decreasing costs to the health care system. The Harlem Hospital Center, for example, saw 5-year survival rates among breast cancer victims increase from 39% to 70% from 1964-1986.3 Another study found that a patient navigation program “paid for the salaries of two full-time patient navigators in just over three-and-a-half months.”4
Although the use of patient navigation in the context of cancer care has been described previously, including here in Journal of Clinical Pathways,5 there are opportunities to apply these same valuable principles beyond oncology to such disease states as Alzheimer’s disease (AD). Patient navigators can improve AD treatment and care by helping those affected by AD and their families to better manage both medical and social services. Incorporating the role of patient navigators into AD clinical pathways can result in improved outcomes versus clinical pathways simply focused on the right drug for the right patient.
THE NEED FOR PATIENT NAVIGATORS IN AD
Given the unique and devastating nature of AD, those affected are searching for guidance both within the health care system and outside it. Additionally, it is becoming more common for people to begin their journey with AD without a family member or capable caregiver to support them. Multiple factors have led to this situation: higher divorce rates, lower marriage rates, increasingly mobile adult children who have relocated to different states and regions, and also increased longevity, in which an adult outlives his or her spouse and siblings by years and even decades. As more adults without family caregiver support are diagnosed with AD, the potential benefits of patient navigation in AD only continue to grow.
The goal of patient navigation in AD is to provide essential, needed assistance to those affected by the disease. Both research and professional insights indicate that patient navigation could best address the specific needs of patients with AD and their families by helping them to overcome obstacles to care (Table 1).
Research has shown that patients with AD have higher rates of hospitalization and emergency department visits6 as well as a greater burden of medical comorbidity,7 all of which lead to increased costs to health care systems. The mean excess per-person health care costs attributed to AD are estimated to be $2300.8 When people who suffer from AD are better managed both medically and non-medically, their overall consumption of health care resources should decline.
LESSONS FROM ONCOLOGY PATIENT NAVIGATION
Though cancer and AD are very different diseases—and though there are vastly different levels of medical solutions to the two diseases—the barriers to treatment and complexity of care have much in common. In both disease states, costs and financial implications of care are a major concern; the logistical challenges with appointments, follow-ups, and prescription adherence are many; and learning to manage the caregiving burden is a profound challenge.
Given these shared obstacles, the benefits of patient navigation in oncology will easily translate to similar benefits of patient navigation in AD. For one, patient navigators operate across the entire continuum of care. From early prevention to post-diagnosis, this broader view of care will prove valuable for those with AD, for which stigma and doubt can prevent proactive measures and complex systems can slow care. For another, the patient navigation model has proven to be adaptable across diseases and patient populations. Because disease progression substantially impacts care needs for AD, this adaptability will be critical. Finally, patient navigation is efficient and scalable. Patient navigators can be placed into the field quickly, requiring neither substantial changes to the medical system nor years of training for the navigators. Training programs for navigators can be expedient, cost effective, and results oriented.
LAUNCHING THE PATIENT NAVIGATION MODEL
The patient navigation model for AD can be focused with the goal of creating a practical, implementable solution that can be launched expediently. While it is recognized that larger changes within the health care system could be made to better meet the needs of those with AD, solutions that can work in the near term are most valued. To that end, the following strategies can help launch the patient navigation model for AD.
Identify and Train the Navigators. In patient navigation in oncology, it is imperative for the navigator to understand fluently the inner workings of the health care system, given the complex set of medical procedures that occur after diagnosis. The situation in AD is different, of course, due to a paucity of medical treatment options. Therefore, the patient navigator must understand how to manage the health care system but also must have the capacity and skillset to work with people and connect them to the resources they need “outside the clinic.” Training materials must be developed to this end.
Secure Funding. Patient navigation in oncology has received a good deal of funding from both public and private donors. It is anticipated that these organizations, which already understand and believe in the patient navigation concept, could similarly provide funding for initial patient navigation in AD efforts. Potential funding sources include Health Resources and Services Administration (HRSA), Center for Medicare and Medicaid Services (CMS), National Institute on Aging (NIA), and the Centers for Disease Control (CDC).
Learn Best Practices. Patient navigation centers in oncology can become partners for providing teaching methods, training curricula, and guidance for best practices. The Harold P Freeman Patient Navigation Institute stands as an example.
Implement Pilot Programs. Pilot programs can test the patient navigation model that this paper has outlined and provide lessons to shape future launches. The Center for Medicare and Medicaid Innovation could be a strategic pilot partner, as could accountable care organizations.
Embed Patient Navigation Within Quality Measures. CMS defines quality measures as “tools that help us measure or quantify healthcare processes, outcomes, patient perceptions, and organizational structure…including effective, safe, efficient, patient-centered, equitable, and timely care.”9 As the entire health care system migrates to a more outcomes-based system, patient navigation can be integrated into this migration within AD treatment and care.
Link to Other Innovative Programs. Medicare’s Programs of All-Inclusive Care for the Elderly (PACE) initiative is an example of a program with which patient navigation programs could partner, given its focus on “helping people meet their health care needs in the community avoiding the burden of nursing homes or other care facilities.” PACE, along with other programs like state-run Cash and Counseling programs, shares overlapping end goals with patient navigation.
As patient navigation for AD becomes a tool for delivering accountable care, it is anticipated that this will have benefits for patients, caregivers, health care providers, and the health system as a whole. Widespread adoption of the patient navigator model will likely be driven by how it can reduce costs to the system. To this end, patient navigation can be measured by the “hard costs and returns,” or outcomes, it provides to the health care system. Initially, it has been proposed that the “outcome measures” are focused on the points of care that have the greatest costs. Success within these areas of focus will likely trigger quick uptake within a health care system.
As in cancer care, patient outcomes in AD depend on far more than just medical treatment. As innovative treatments become available for AD and are incorporated into new clinical pathways for this disease state, patient navigators will be a vital resource to integrate into these guidelines. This integration of patient navigators into clinical pathways can assist right at the beginning of the AD journey, beginning with diagnosis. When the diagnosis is made, the clinical pathway can assist with assuring the right treatment for the right patient. However, as with cancer care, care needs to be provided beyond the patient and medications to include caregivers and other non-medication factors. By developing and implementing AD clinical pathways that include patient navigators, improved outcomes can be achieved.
1. National Institute of Health, National Cancer Institute. Voices of a Broken System: Real People, Real Problems. President’s Cancer Panel: Report of the Chairman 2000-2001. http://deainfo.nci.nih.gov/advisory/pcp/archive/pcp00-01rpt/PCPvideo/voices_files/PDFfiles/PCPbook.pdf. Published September 2001. Accessed March 15, 2016.
2. Harold P. Freeman Patient Navigation Institute website. http://www.hpfreemanpni.org/. Accessed March 15, 2016.
3. Oluwole SF, Ali AO, Adu A et al. Impact of cancer screening program on breast cancer stage at diagnosis in a medically underserved urban community. J Am Coll Surg. 2003;196(2):180-188.
4. Balderson D, Safavi K. How Patient Navigation Can Cut Costs and Save Lives. Harvard Business Review. https://hbr.org/2013/03/how-patient-navigation-brings. Published March 19, 2013. Accessed March 12, 2016.
5. Riley S, Riley C. The role of patient navigation in improving the value of oncology care. Journal of Clinical Pathways. 2016;2(1):41-47.
6. Feng Z, Coots L, Kaganova Y, Wiener J. Hospital and emergency department use by people with Alzheimer’s disease and related disorders: final report. The US Department of Health and Human Services. https://aspe.hhs.gov/basic-report/hospital-and-emergency-department-use-people-alzheimer%E2%80%99s-disease-and-related-disorders-final-report. Published August 2013. Accessed March 15, 2016.
7. Duthie A, Chew D, Soiza RL. Non-psychiatric comorbidity associated with Alzheimer’s disease. QJM. 2011;104(11):913-920.
8. Zhao Y, Kuo TC, Weir S, Kramer MS, Ash AS. Healthcare costs and utilization for Medicare beneficiaries with Alzheimer’s. BMC Health Services Res. 2008;8:108.
9. Centers for Medicare and Medicaid Services. Quality Measures. CMS Web site. https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityMeasures/index.html?redirect=/QUALITYMEASURES/. Accessed March 15, 2016.