My experience with cancer began when I was told as a teenager that my stepbrother had osteosarcoma. I was very confused. The idea of my sibling having a life-threatening illness was beyond my comprehension. We lived in rural Maine, and I did not understand why my stepdad had to repeatedly take my stepbrother to Boston for treatments. My second formative experience with cancer was just after I finished college. Only weeks into my first “real job,” I abruptly left to nurse my Nana in her final weeks of life. After 2 mastectomies, she ultimately succumbed to metastatic breast cancer. Six years later I was finishing my PhD in English literature when my stepdaughter’s mom fell ill. I vividly remember a neurosurgeon declaring with the utmost confidence that she would fully recover within days of the surgery for a brain tumor. She ultimately never regained consciousness following her brain surgery. This experience with the healthcare system left me angry and determined to improve the experience of others.
For both financial and emotional reasons, I left my PhD program to take a position at The Children’s Inn at the National Institutes of Health (NIH). There I met children and families who inspired me with their ability to take 1 day, indeed 1 test, and 1 treatment at a time. One little girl who had spent years away from her father and siblings would visit me each morning with a smile and a new piece of art to hang on my wall. Maria had come to the NIH in the hope that scientists there could help her with a disease that typically affected older people—chronic myelogenous leukemia. I spent years with this child, where the Inn truly became her home away from home. As she lay in the inpatient unit at NIH never to be discharged, Maria smiled at the sonogram of my daughter, Iris. Maria’s funeral was the first of Iris’ month-old life.
After several years at The Children’s Inn, I took a position as Community Outreach Manager for the Leukemia & Lymphoma Society’s National Capital Area Chapter. In that position, I was responsible for healthcare professional education as well as advocacy, including educating school personnel about the physical, psychosocial, and cognitive impacts of cancer on children returning to school following treatment. My experience there taught me much about educating healthcare professionals and the staggering needs of children and families following a diagnosis of cancer. One of my proudest accomplishments was spearheading grass-roots efforts that led to the passage of the 2008 Clinical Trials Insurance Coverage Act in Washington, DC (D.C. Law 17-166).
In 2008, I left the Leukemia & Lymphoma Society to become Founding Director of the Division of Survivorship at the George Washington University Cancer Institute (GW Cancer Institute). In that capacity, I was humbled by the pioneers of the field who so generously spent time talking to me and sharing lessons learned as I created a survivorship program at the GW Cancer Institute. Together with clinicians at the GW Cancer Institute and Children’s National Medical Center, I helped establish the first comprehensive, multidisciplinary cancer survivorship clinic in Washington, DC, for adults. I also had the privilege of launching and directing a new Center for the Advancement of Cancer Survivorship, Navigation, and Policy (caSNP)—a training and research center built in collaboration with the George Washington University School of Public Health’s Department of Health Policy.
In 2011, I was promoted to Associate Director of Community Programs for the GW Cancer Institute and, recently, I was designated the Director for the institute. As Director, I am responsible for strategically planning and implementing prevention, community health, patient navigation and survivorship programs, as well as overall fiscal management and development for the institute.
I am Principal Investigator for a Centers for Disease Control and Prevention (CDC)-funded cooperative agreement (U38DP004972-01) to enhance technical support for comprehensive cancer control (CCC) implementation across the country. The CDC established the National CCC Program to support a coordinated approach to preventing and controlling cancer in local communities. As technical support partner for this program, the GW Cancer Institute helps CCC coalitions create policy, systems, and environmental changes; sustain partnerships; and communicate program successes. The GW Cancer Institute provides monthly webinars, develops free trainings, and shares evidence-based interventions and best practices for CCC. We are currently converting our popular live training for patient-centered program leaders, the Executive Training on Navigation and Survivorship, to an online environment. We are also building an online training for unlicensed patient navigators that will be the first developed from consensus-based patient navigation competencies. We have established consensus-based functional domains for patient navigators, working in collaboration with the Academy of Oncology Nurse & Patient Navigators, the Association of Community Cancer Centers, the National Association of Social Workers, the Association of Oncology Social Work, the Oncology Nursing Society, and with patient navigators in various settings across the United States. We will next develop competency statements and validate those through a national survey prior to developing the free online navigation training.
I am also Co–Principal Investigator for a Patient-Centered Outcomes Research Institute–funded study evaluating cancer survivorship care models in collaboration with LIVESTRONG, the American College of Surgeons Commission on Cancer, the American Cancer Society, and the Cancer Support Community. The research study seeks to determine which healthcare delivery model best meets cancer survivors’ prioritized needs and outcomes. Through focus groups across the country and a national patient survey, we are developing a framework for quality cancer survivorship care. We are simultaneously conducting an environmental scan of the nearly 1500 Commission on Cancer–accredited institutions in the United States to discover what survivorship services they are providing, how, and by whom. We will then compare the effectiveness of different models of survivorship care using the framework of quality cancer survivorship care developed directly from survivors’ articulated concerns. This study is poised to have a major impact on the healthcare services offered to cancer survivors across the country.
Since 2010, I have served as Project Director for the National Cancer Survivorship Resource Center, a collaboration with the American Cancer Society funded by a CDC cooperative agreement (#1U55DPOO3O54). The center aims to reduce health inequities and improve health outcomes of cancer survivors at a national level. Through this project, I have led the development of a policy landscape analysis for cancer survivorship, led focus groups to better understand primary care providers’ needs and preferences for posttreatment cancer survivorship practice guidelines, and supported the development of guidelines for breast, prostate, colorectal, and head and neck cancers. My team at the GW Cancer Institute has also developed a free Cancer Survivorship e-Learning Series for Primary Care Providers available at www.cancersurvivorshipcenteredu cation.org. Free CME is provided for physicians, physician assistants, nurse practitioners, and nurses.
Finally, I am Principal Investigator for the GW Cancer Institute’s Avon-funded Safety Net program, the Komen-funded Citywide Survivorship Initiative, and the DC Citywide Patient Navigation Network (CPNN). Through steadfast support from Avon and Komen, we have provided seamless patient navigation for patients with cancer across the breast care continuum at the GW Cancer Institute, and we have made quality improvements to the healthcare system. Through CPNN, primary care clinics, community-based organizations, and cancer centers have collaborated to remove over 26,000 barriers to healthcare experienced by more than 7000 patients at various points along the cancer continuum from August 2010 through July 2013. Most individuals served by the network are racial or ethnic minorities. Top barriers experienced by patients are financial challenges, social/practical support needs, system challenges, and language barriers. Other major barriers to care are transportation, geographic location of healthcare facilities, fear and communication barriers, and employment concerns. We are currently seeking support to sustain core costs for the network.
I have been blessed with a dedicated team and amazing colleagues. I have a supportive supervisor and top-notch resources available to me at George Washington University. However, what drives me is still extremely personal. A few years ago, my closest friend since kindergarten lost her first husband to metastatic melanoma. Her grace, strength, and resilience as a caregiver continues to astound me. These are the people who keep me focused every day—my sibling; my Nana; my stepdaughter’s mom; my little friend, Maria; and my closest childhood friend. I carry them with me always, and they inspire me every day. It is truly humbling and gratifying to have a career that allows me to continually improve patient-centered care locally and nationally.