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How I Became a Patient Advocate and Cancer Research Consultant

Jul 15, 2020

Diana Chingos, MS, MFA, wears many hats as a patient advocate and consultant. “I advocate for people with cancer—most often breast cancer—who are newly diagnosed or newly diagnosed with metastasis. I advise cancer researchers and funders working in many different clinical and scientific disciplines of cancer—and provide the patient’s perspective as a cancer survivor myself,” she said.

Ms. Chingos’ work has taken place locally, statewide, and nationally. She co-founded the Cancer Survivorship Advisory Council at the University of Southern California (USC) in Los Angeles in 1991 and led the organization until 2003. She has served as the executive director of the Noreen Fraser Foundation in Los Angeles, on the State of California Breast Cancer Research Program (CBCRP) Council, and for a decade on the NCI/NIEHS External Advisory Board/Working Group for the Breast Cancer Environmental Research Centers. She has reviewed grants for numerous organizations, including the U.S. Department of Defense Breast Cancer Research Program, Komen for the Cure, Avon, the National Cancer Institute (NCI), the National Institute for Environmental Health Sciences, the Patient Centered Outcomes Research Institute (PCORI), and others.

How did you choose your current career path? Were there any unexpected detours along the way?

DC: I began with a career in film/TV production, and if there was an unexpected detour along the way, it was a breast cancer diagnosis—actually, three diagnoses within 4 years while in my 30s. My friends were starting families and advancing in their careers, while I was trying to option a TV show from my hospital bed, wearing a loose shirt at work to hide surgical drains, and napping in my car at lunch after early-morning radiation sessions so I could keep up at work—radiation can be exhausting.

My educational and professional background was far removed from medicine and science. I might have benefitted from an interpreter—or an advocate—as I attempted to understand my treatment options and potential late effects, all the while undergoing body- and life-altering surgery and treatment. While challenging at the time, it provided the impetus for my current work and has sensitized me to translating complicated terminology into lay terms and to advocating for effective provider-patient communication.

While the breast cancer advocacy movement was catching fire in the 1990s, I was fortunate to find my way to the National Breast Cancer Coalition and its training in the science of breast cancer for advocates (Project LEAD). My career path has been circuitous, at best. It’s also been highly rewarding as I’ve helped many during difficult times in their lives, sometimes the most difficult time in their life—including my brother as he confronted a diagnosis of stage IV gastroesophageal cancer. It’s been fascinating to witness progress in cancer research—new agents, new surgical techniques and regimens, genomic and biomarker discovery, increased understanding of the genes implicated in hereditary cancers—and to interact with so many talented cancer scientists. It’s now critical that this progress filters to community oncology centers from academic centers, that certain intractable cancers benefit from new discovery, and that disparities are eradicated.

Describe your typical workday.

DC: My workdays are quite varied, which suits me well. A day could include phone calls with newly diagnosed patients in search of information, a physician referral, or emotional support, or a trip to an oncologist with a patient who wants to fully understand the treatment options available. I might be researching clinical trials for a client or reading grant applications for a research program or for a scientist about to submit a grant to a research program.

Every day I read ASCO’s “Cancer in the News” email and catch up on breaking news in oncology: new drug approvals, study results, journal articles. As I’m ensconced in the breast cancer community in Los Angeles, I might want to inform a patient about a new drug, research finding, or resource.

As a member of the Institutional Review Board at USC, I spend time each week reviewing clinical trials and attending weekly panel meetings. Monthly I meet with the State of California IRB when it convenes.

As a consultant on research projects, I meet with, or take part in, conference calls for many different studies with which I’m involved. It could be the PCORI-funded large, pragmatic effectiveness trial of lung nodule surveillance (entitled “Watch the Spot”), led by Michael Gould, MD, at Kaiser, or breast cancer environmental exposures studies led by Anna Wu, PhD, at USC and her research team. An exciting breast cancer exercise study taking place at the San Diego Biomedical Research Institute had to be placed on hold, the unfortunate result of the COVID-19 pandemic.

As a member of the National Clinical Trials Network Core Correlative Science Committee, I review applications for use of biospecimens from NCI Cooperative Group studies. These meetings require a deep dive into the literature on specific biomarkers or clinical trials as preparation, which are then discussed via teleconference.

Generally speaking, it’s like having constant homework and loving it. It’s ideal for someone who is devoted, motivated, altruistic, and interested in many different aspects of cancer care/research, and is highly informed about what’s right and wrong with the status quo.

If you have to pick one aspect, what part of your job is your favorite? What part is the most challenging or frustrating?

DC: I’m honored to help patients navigate their care when up against diagnosis and treatment. Patients become anxious receiving the various kinds of news that comes with a cancer diagnosis. Bad news, good news—trying to absorb and digest the implications of every little thing. There are so many issues that need sorting, and oncology professionals tend to advise and ascribe priority according to their area of expertise. Experienced patients and advocates can provide a fully informed overview of the treatment journey. That’s my favorite part.

Nothing unites like a common enemy. Our health care industry and insurance companies have become extraordinary impediments to care. Managed care networks, common in California and several other states, limit access to providers. Provider lists do not reflect the most up-to-date information on specialists. Pre-authorization increases administrative burden and slows care. Biopharma has created exciting new drugs that offer benefit where none existed, but insurers don’t have them in their formularies or they’re unaffordable. There are chemotherapy drug shortages of commonly used agents, causing treatment delays and reduced dosing. Patient assistance programs can take many months to process applications and communication is poor. There have been improvements to clinicaltrials.gov but despite this, it can take days to get through to study coordinators to find out the status of a clinical trial. I could go on ad infinitum. In light of this, it’s astounding the system works as well as it does. These systematic barriers to high-quality care are the most challenging aspect of my work.

What do you wish more oncology professionals knew about the work that you do?

DC:  If only there was greater understanding of my roles and the work that I do, especially with oncologists and other cancer clinicians. Some do not “get” advocate involvement, whether in navigating a patient through the medical system, reviewing a clinical trial or grant application, or the dynamic of survivor-scientist engagement on a study. They might look upon advocates as malcontents and, undeniably, some advocates start that way because they haven’t been served properly by our health care system. It’s always been interesting to me that if you’re an MD with concerns about the system, you’re credible and command attention. But if you’re a patient who has had a bad experience, you can be perceived as disgruntled even if you have the very best intentions to improve the status quo. We say “nothing about us, without us” as we want to work jointly with other stakeholders towards progress and see our health care consumer expertise as vital.

I wish oncology professionals would understand that despite their own generosity of time and attention with patients, which is considerable and unquestionable, patient advocates can spend many more hours with patients, helping them to understand terminology, their pathology reports, the rationale for their treatments, as well as helping them to live in the present. Patients confronting the news of a cancer diagnosis can go inside themselves, or their minds wander, and their recollection is spotty. Oncologists know this intellectually but can have difficulty addressing it. Patients frequently need much more time to digest information and focused attention, not just because they’re up against a life-threatening diagnosis but because they’ve entered a system which is not designed for optimal care of the patient.

Although many do, not all medical specialists take the time to translate medical terminology into lay language and advocates can be very helpful for this. Oncologists are very focused on the here-and-now, which is critical to cancer care, but there can be other considerations including side effects and quality of life, fertility issues, potential side and late effects of treatment, patient assistance programs, and cost—a long list.

What advice would you give to an early-career oncologist about working effectively with patient advocates?

DC: Very knowledgeable patient advocates can appear to be threatening to early-career oncologists—I say, learn from them. I’ve observed an interesting transition with medical students as they advance through their training. Early in medical school they are earnest and ready to conquer. At the start of this learning curve there is an openness to the patient’s perspective and to making a difference in their lives. Many graduate medical students get increasingly inured, as the system seems to require. They tend not to feel the freedom to engage with patients until they are fully established as oncologists, although not all make that leap. Patients and oncologists should be on the same side, and when they’re not, I have to ask, why? I advise oncologists early in their careers to respect that patient advocates are also experts who want to see progress, and are probably even more keenly aware of how things go wrong for patients and what is absolutely right.

Is there a moment that has shaped your professional journey that stays with you?

DC: After performing this work for so many years, I’ve had several such experiences with many physicians, researchers, patients, and other advocates who have shaped my professional journey. Some were inspiring in the best possible way and others propelled me because they were the opposite of that—parentalistic thinkers upholding the old guard.

As a very memorable positive, I recall Peter Jones, PhD, DSc, then director of the Kenneth Norris Comprehensive Cancer Center, convening a retreat of the cancer center scientists. He kicked off the proceedings by stating to the audience, “As cancer researchers, you’re not here because you’re good at biology or biochemistry. You’re not here for the money. You’re not here to get a patent or get published. You’re not here to get grant funding and tenure. You’re not here to win an award. You’re here to improve the lives of people with cancer, to make meaningful differences in the length of their lives.”

A hush fell over the room. I never forgot it. Patients share this sentiment but cancer experts really listen when it comes from someone like Dr. Jones, who is an exceptional basic scientist, has patents, has been published, funded, tenured, and awarded, and is still making a difference in the lives of people with cancer. We have still not conquered cancer, but we have the greatest chance of success if we all work together in the best interest of the patient.

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