An Interview with Lillie D. Shockney, RN, BS, MAS
Ms Shockney is Program Director and Cofounder, AONN+; University Distinguished Service Associate Professor of Breast Cancer, Departments of Surgery and Oncology; Administrative Director, The Johns Hopkins Breast Center; Director, Cancer Survivorship Programs at the Sidney Kimmel Cancer Center at Johns Hopkins; Associate Professor, JHU School of Medicine, Departments of Surgery, Oncology, Gynecology and Obstetrics; Associate Professor, JHU School of Nursing, Baltimore, MD.
The terms “nurse navigator,” “patient navigator,” and “lay navigator” are slowly becoming part of the vernacular in oncology circles. In turn, nurse navigation is evolving into its own distinct field within oncology nursing. The goal of a nurse navigator is to successfully navigate patients through the maze of their oncology treatment—from diagnosis through survivorship or end of life.
The concept of navigating patients was first explored through a program led by Harold P. Freeman, MD, in Harlem, New York. The goal of this first navigation program was to reduce the high death rate in poor African American women with breast cancer by eliminating barriers to timely care between the point of suspicious finding and the resolution of the finding by diagnosis and treatment.1 Dr Freeman’s program was inspired by a report issued by the American Cancer Society entitled “Report to the Nation on Cancer in the Poor,” which stated that those in poverty faced many more barriers to care than those not considered impoverished, such as financial barriers, communication and information barriers, medical system barriers, and emotional barriers.
Since then, the role of navigators has expanded into all stages of cancer care from prevention through survivorship. Navigator programs are supported by the government and are even required by accrediting associations such as the American College of Surgeons Commission on Cancer.
The emergence of navigation programs is a movement within the oncology community that continues to gain momentum. This journal exists to support those in this burgeoning field: to provide them with the tools they need to excel in their careers as navigators, connect them with others in the field, and ultimately have a positive impact on patient care. To learn more about this movement, the publishers of the Journal of Oncology Navigation & Survivorship (JONS) interviewed our own Lillie D. Shockney, RN, BS, MAS, the Editor-in-Chief of JONS and cofounder of the Academy of Oncology Nurse & Patient Navigators. Ms Shockney has been the Administrative Director of The Johns Hopkins Breast Center since 1997. A 2-time breast cancer survivor, Lillie has worked tirelessly to improve the care of patients with breast cancer around the world. She is a registered nurse with a bachelor of science degree in healthcare administration from Saint Joseph’s College and a master’s in administrative science from the Johns Hopkins University. She has worked at Johns Hopkins since 1983 and is a certified breast cancer patient navigator. In 2011, she accepted the inaugural role as Director, Cancer Survivorship Programs at the Kimmel Cancer Center at Johns Hopkins.
Ms Shockney is a published author and nationally recognized public speaker on the subject of breast cancer. She has written 14 books and more than 250 articles on this subject. She serves on the medical advisory board of several national breast cancer organizations and is the cofounder and vice president of a national nonprofit organization called Mothers Supporting Daughters with Breast Cancer.
Our publishers spoke with Ms Shockney about the role of navigators in oncology care, including the current trend of “personalized” care for oncology patients. What follows is their insightful exchange.
JONS To begin, can you please provide your definition of personalized medicine?
Ms Shockney Personalized medicine can be defined as treatment that is tailored to the patient—tailored from the perspective of being specific to the type of cancer, the prognostic factors of the cancer, and genomes of the cells. I would also hope that this includes the idea of patient-centered care by addressing the needs of each specific patient. The patient is more than his or her pathology. They have life goals that should be incorporated into the treatment planning process. They need to not just survive the disease and its treatment but also have their quality of life preserved or restored when their treatments are done. And for those with advanced cancer that will cause their death at some point, they deserve to be treated based on their goals, not someone else’s. Treatment for treatment sake is bad care.
JONS Over the past decade, we have learned about many oncology departments instituting a nurse navigation program. How do you define a nurse navigator?
Ms Shockney An oncology nurse navigator is someone who is the patient advocate. This includes being there for the patients to educate them about their disease and its treatment, empower them with information so that they can actively and confidently participate in the decision-making process of their care, identify barriers to care and treatment, provide resources to overcome those barriers, and facilitate coordination of care. The nurse navigator is commonly the hub of the wheel for the multidisciplinary team taking care of the patient. The navigator needs to ensure that the entire team is aware of the patient’s life goals and how to dovetail them with a workable treatment plan. In today’s environment, we need to ensure that the patient’s care is delivered efficiently, effectively, and in keeping with National Comprehensive Cancer Network treatment guidelines. The right treatment at the right time in the right setting.
JONS More recently, we have heard the term “patient navigator”; how does this differ from “nurse navigator,” and would you define their role on the cancer care team?
Ms Shockney A nurse navigator is a patient navigator who has a clinical degree and therefore can play a more active role in the care of the patient. A patient navigator is a term commonly used to refer to a lay navigator—a navigator who doesn’t have a clinical degree. These individuals can do some types of patient education, distribute educational materials to the patient, identify barriers to treatment (such as lack of transportation), and provide the resources to undo those barriers (giving the patient taxi vouchers). This type of navigator would be involved in scheduling appointments and following up with the patients to make sure they remembered their appointments for this week, kept them, and assist with orchestrating next steps such as consultations and tests.
JONS How do navigators enhance the ability to provide personalized care?
Ms Shockney Navigators achieve personalized care by promoting and demonstrating patient-centered care. Looking at the patient as a whole person and not just as the disease. Recognizing that the patient before you is a school teacher who is divorced and has a 9-year-old with autism. She loves to swim. And she happens to have stage IIA breast cancer right now. Being able to consider all these aspects of her life will go far to personalize her care.
JONS Historically, navigation was instituted to reach underserved communities. Is this still a primary focus of the navigator profession?
Ms Shockney Patient navigation was started in the 1990s by Dr Harold Freeman, who recognized that many underserved women were diagnosed with breast cancer. He created “navigators,” much like case workers today, to go out into their local communities and promote awareness, undo myths, instill the facts, and get women to come in for screening mammograms. By doing so, he reduced the mortality rate of African American women in Harlem in New York City. Nurse navigation had a bit of a different beginning in that it evolved from utilization review nurses who reviewed inpatient medical records retrospectively to identify barriers to care that insurance carriers and Medicare and Medicaid should not be responsible to pay, such as a delay in getting a CAT scan because it was the weekend or not getting transferred to a lower level of care until a bed opened up at a rehab center. These inefficiencies were not reimbursable.
Utilization review evolved into utilization management, whereby the nurse would now review the inpatient medical record while the patient was in the hospital, but still identify these barriers as they continued to occur. This responsibility was absorbed into case management in which the nurse became a team member on the multidisciplinary team. Today, we refer to this as nurse navigation. A component of the navigation role is to study the current patient flow process and identify where there are gaps, delays, and inefficiencies and then reassess these pathways to eliminate delays and bottlenecks, as well as to prevent patients from falling through the cracks. Navigation is no longer just for underserved people. Navigation is of benefit to all cancer patients today.
JONS Oncology care and its coordination can be overwhelming for patients. Can you describe how a navigator can assist in this area?
Ms Shockney Navigators can create a timeline so that the patient can see where they are today and what lies ahead of them. They can serve as the patient’s touchstone across the continuum of care. They can follow up with the patient to address questions and ensure the patient understands his or her role in complying with the next phase of treatment.
JONS Educating patients and their families is another area where navigators can be extremely valuable and helpful. Can you speak to the ways in which navigators provide education from diagnosis through survivorship?
Ms Shockney Patient education is a key role and responsibility of navigators. Whether it is providing patients with written, easy-to-understand information; showing them an animation of how a procedure is done; verbally explaining the steps that are involved with receiving chemotherapy every other week; or even providing direction on how to communicate to young children that they have cancer; all are important elements of patient education. When done well, education empowers the patients and their families to understand what they are dealing with, how to cope with it, how to stay on track, and even how to continue living their lives while receiving their cancer treatments. Education is critical because it is a primary way that helps patients participate confidently in the decisions about their treatment options.
JONS What would you say are the most common barriers to care that navigators experience in their practice?
Ms Shockney Nationally, it has been proven to be transportation. The second most common barrier is financial, also known as financial toxicity. As drug costs escalate along with copayments and deductibles, this second barrier will likely become the primary one.
JONS As of last year, the Commission on Cancer, part of the American College of Surgeons, has required cancer centers to offer patient navigation services to meet accreditation requirements. Do you think other accrediting organizations will follow this trend?
Ms Shockney I think that implementing navigation programs shouldn’t be dependent on requirements set forth by accreditation standards—programs should be implemented because it’s the right thing for patients. But I appreciate that this is an effective way to move the healthcare system forward toward improving the patient care experience.
Cancer is now considered a chronic disease. It took decades, really centuries, to reach this point of understanding. The challenge now is how to continue navigation services once the patient has completed active treatment and is transitioned back into the care of their community providers. You might call this “survivorship navigation.” We are also learning that we are handholding the patients so much during treatment that they aren’t mentally prepared for the navigator to discontinue her contact once they are back with their primary care provider (PCP), who is now serving as their cancer survivor doctor. This is an area that requires more work, more study. There are standards regarding patients and their PCPs having a treatment summary and survivorship care plan, but having pieces of paper doesn’t mean that they are being followed, much less understood. So here is an opportunity for more research.
JONSThank you very much for speaking with us. We wish you continued success.
Ms Shockney Thank you very much.
- Freeman HP. The origin, evolution, and principles of patient navigation. Cancer Epidemiol Biomarkers Prev. 2012;21:1614-1617.