My introduction to the world of cancer came when I was in college, via a phone call from my mother who was 3000 miles away. For weeks she had delayed calling my siblings and me to tell each of us that she had ovarian cancer, until she was having a good day when the chemotherapy was not wreaking havoc. Not wanting to worry us, she made a joke about the quickest way to lose weight was to have a hysterectomy. Then 20 years later, she told us she had early-stage breast cancer. I had matured enough and learned enough to insist that I visit to see how I could support her and my dad as they managed this second cancer. Remarkably, 10 years later at 84, my mom is still leading an engaged, vital life. And I am working in cancer advocacy as a lay navigator.
It is not that my mother’s illnesses alone drove me to pursue this work in the way you might think. The other contributing factor is that my degree is in studio art. For a number of (youthful and valid) reasons, I pursued this degree, ignoring an interest in social work and without giving much thought to how I would support myself after college. The good news is that I have had the gumption to evolve professionally on a somewhat circuitous path to work where I can make a difference in other people’s lives, even if I am not a social worker.
Medical Sciences Gives Options, Not Solutions
A background in marketing, education, and nonprofit office management, with attendant administrative, technical, and teaching skills, eventually led me to an education and outreach position at a community hospital cancer program. At the time, the hospital conducted open community screenings for prostate cancer, which in 2006 were seen as a public service of raising awareness. However, the screening guidelines about who should be screened were actively debated. To better manage the screening events, I began to read about prostate cancer, risk factors, screening, and treatment. The more I read, the more I thought that given the debate about screening, we needed to provide the men with education about the path they would be on, if their screening yielded an abnormal finding. The screenings also raised questions about what guidelines the certified urologists would follow, since those were in flux. My contribution then included ensuring that the clinical guidelines and process used followed the current recommendations, as well as improving how we educated the participating men.
The prostate cancer screening experience impacted my awareness about my own personal health risks and screening. After my mother had completed treatment for breast cancer and asked me if I wanted her to do BRCA testing, I needed time to thoughtfully answer. What would I do if she were BRCA positive? Although I was pretty sure I was done with having children—I had 2 young beauties at the time—did I want certain knowledge that would require a decision about having a prophylactic oophorectomy or double mastectomy? And what about my sisters; would they want to know the results? We might be obligated to tell them, which would force them to make similar decisions about their own preventive actions. Ultimately, I decided that the more information I had, the better. And as it turned out, my mom was BRCA negative, with the panel available at the time. I learned about the complexities of patient decision-making regarding testing, screening, and reducing risk.
This was my first influential experience that made clear to me that medical science offers options, but not necessarily solutions. Just as the science is leading us to understand that an individual’s biology is key to effective treatment, identifying the right treatment for an individual entails knowing who they are and what is important to them. As a patient advocate, I have come to understand that quality healthcare must exist in an environment where patient preferences are center stage. Pertinent to patient preferences is that the patient understands the full meaning of the options provided to them—whether it is a free screening, oral versus infused chemotherapy, a clinical trial, mastectomy or lumpectomy, surgery versus watchful waiting, and so on. How do we know if a patient gives full consent? How do we test their comprehension about the full meaning of the decisions we stand by them to make?
Perhaps it is because I recognize that I learn best on the job that I said “yes!” when offered the chance to lead the hospital in implementing a “no-smoking” policy on the campus. The policy was going to be implemented at all the county hospitals, so leading the initiative meant collaborating with staff from the other hospitals, as well as working with multiple departments in my own hospital in determining how we would manage the human resources, patient/visitor, and marketing aspects of the new policy. This was a remarkable opportunity for me to be part of a hospital-wide initiative that made complete “health” sense, exposed me to many diverse departments in the institution, and required buy-in and cooperation for many staff. What I have learned is that while there have been times that not having a clinical specialty could have been a limitation for me, oftentimes being something of a generalist has enabled me to participate in some impactful projects. And it pays to say “yes!”
As director of survivorship programs at a national cancer advocacy hospital institution program, I had the opportunity to expand my skills and knowledge about project management, patient resource development and evaluation, healthcare professional education, and health policy. I oversaw a Centers for Disease Control and Prevention grant for the development of hematologic patient resources, worked with content experts in developing patient self-advocacy print materials, and was on a team that developed an iPhone app to facilitate effective discussions between patients and providers. I represented the organization on the team that created Journey Forward, a tool for creating survivorship care plans. I worked with cancer survivors on staff, grassroots advocates, lobbyists, policy staff, nurses, social workers, the American Society of Clinical Oncology, the National Association of Social Workers, the Oncology Nursing Society, health insurers, and pharmaceutical companies. Through these relationships, I was fortunate to learn from health policy thought leaders; dedicated, frontline oncology providers; and survivors about many of the challenges associated with the complexity of cancer care, problems inherent in our healthcare system, and the importance of hearing the patient voice in defining and delivering quality cancer care.
My current role at Sibley Memorial Hospital, Johns Hopkins Medicine, is both as a survivorship program developer and survivorship navigator. Each of these roles could be a full-time endeavor, but I appreciate having the diversity in my work. One role allows me to think strategically and the other keeps me in touch with the reality of one individual at a time. The navigation I do is structured in part by the process we have developed for patients transitioning from active treatment. Our nurse practitioner conducts a wellness transition visit, where she delivers a survivorship care plan, discusses current side effects, and lays out a written plan moving forward. I follow up with the patients to assess how things are going and direct them to resources within the hospital or in the community. Training in integrative navigation has helped shape the goals and approach I take in this work. Many patients seek ways to reduce their risk of recurrence and are motivated to make lifestyle changes, and offering programs and navigation to integrative resources is in demand.
My interest in quality improvement and research lies in recognizing that there are profound effects of treatment for the individual, and we are obligated to help each patient make choices that are the best for them. Patients expect that their providers will give them the best evidence-based care, and that includes treatment options, decision-making tools, educational materials that are tested, cultural and literacy appropriate, with full disclosure about cost, side effects, and impact on quality of life. Whatever the intervention, it requires some form of research or testing. Of course treatment decisions impact survivorship, yet another area where more research is needed. As a lay navigator and program planner working in a hospital setting, I can initiate and implement quality improvement projects.
My interest on the AONN+ Evidence into Practice Subcommittee is to collaborate with other people in the pursuit of quality improvement. While I am not a formal research or clinical professional, I have been involved in various research projects with educational interventions (with Kaiser Permanente), various focus groups, and numerous programmatic evaluations. As navigators, we have natural opportunities to evaluate what we do and make the care we provide to patients even better. And I see the AONN+ community as my extended partners in quality improvement.