Anabella Aspiras takes the “moon” in “Cancer Moonshot” very seriously.
She is the director of patient engagement on Vice President Biden’s Cancer Moonshot Task Force, a $1 billion project to end cancer through scientific and community collaboration. Aspiras tell us she interprets her Moonshot role literally, describing it as “reflecting to [her] colleagues both the challenges and light of patient care.”
Earlier this week, Biden delivered a report in Boston on the Task Force’s progress, urging the next administration to take up the effort. The report outlined more than 30 big projects that would make up the Moonshot initiative, including the development of a cancer blood test that a Baltimore-based Johns Hopkins spinout company will work on, our sister site Technical.ly Baltimore reported.
We met Aspiras when she spoke on a panel at the White House’s Open Data Innovation Summit in September. At the Summit, she underscored her points about the power of open data and patient engagement by sharing a personal anecdote: her recent move to D.C. meant a painful, difficult health record transfer process from Brooklyn.
“Imagine my situation for someone who just diagnosed with very aggressive cancer,” she said.
We reached out to learn more about patient engagement, what open data opportunities are out there for cancer data and who inspired her to pursue medicine in the first place.
Aspiras is a D.C. native, who returned to the District to join the Moonshot Taskforce after several years of working in Brooklyn and abroad with Doctors without Borders.
So, consider this Aspiras’ Re-Entrance Exam. Read our interview below, and follow Aspiras’ work on the Cancer Moonshot site.
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This transcript has been lightly edited.
So, you’ve been everywhere from Haiti, South Africa and Guyana through your work with the Red Cross and Medical Missions Outreach. Where did you grow up?
It’s no longer there, but I was born at the Columbia Hospital for Women, right here in Washington, D.C., and grew up in Silver Spring, Md. My first job as a registered nurse was actually in Silver Spring, too, at Holy Cross Hospital.
You started college at the University of Maryland College Park with a BA in government and politics. What led you to study nursing at Johns Hopkins?
I started at UMD (Go Terps!) with every intention to obtain my BSN (bachelor’s of science in nursing) — I had wanted to become a global health nurse ever since I learned about Doctors Without Borders as a teenager.
In my first year at UMD, I became deeply engaged in my international politics courses and changed my studies to international development. While studying abroad in South Africa, I worked at a pediatric facility funded through the International Committee of the Red Cross and was exposed to all the things — community presence, empathy, kindness, strength — that drew me to nursing in the first place.
I knew that when I returned to the U.S., I would also return to my original calling, nursing. So, a few years later I graduated from Hopkins with my Bachelor of Science in Nursing.
When did you come to D.C. for your new job?
I came from Brooklyn, N.Y. to D.C. at the end of April, and, coming full circle, live in Silver Spring with my best friend’s parents.
Can you tell us more about this job that lured you back here?
The opportunity to serve as director for patient engagement on Vice President Biden’s Cancer Moonshot Task Force spoke to every meaningful identity I know: nurse, hospital administrator and daughter whose mother died of metastatic breast cancer.
I always say that I take the “moon” in “Cancer Moonshot” very literally and see my role as reflecting to my colleagues both the challenges and light of patient care — truly, it is a privilege to care for oncology patients. When the opportunity presented itself to join the Cancer Moonshot and ensure that our work is anchored to the patient experience, I didn’t think twice.
You’ve criticized how patients are treated in U.S. health care before, saying, “The healthcare system is not designed to learn from patients.” What can our health care system learn from patients?
We have everything to learn from our patients. When we listen to patients speak about their care, we learn how to improve and design care delivery models that put patients at the center. Patients’ genetics and lifestyles hold the keys to unlocking cures and finding better treatments.
Perhaps the most important thing a patient ever taught me was to remember what’s important. As providers and policymakers caught in the chaos of change and transition, we must work tirelessly to listen to patients.
At last week’s White House Data Innovation Summit, panelists discussed the Cancer Moonshot’s new Open Access “Genomic Data Commons” made with the National Cancer Institute. Can you tell us about that?
The Genomic Data Commons, or GDC, is a one-of-a-kind resource that houses large-scale, high-quality, raw data, including
- federally-funded genomic projects.
- privately-funded genetic datasets.
- foundation-funded large-scale data.
What sets the GDC apart is that it contains harmonized, raw, unprocessed datasets so that researchers can verify each other’s findings. Having high-quality, raw data readily and freely available to the research community can accelerate scientific breakthroughs, and, by extension, medical advances for patients.
Right now, the GDC is open for anyone to access.
When you visited the Lancaster General Health’s Barshinger Cancer Institute in August, you were quoted saying that community work, “is perhaps the most important work in the Cancer Moonshot.” What experiences led you to this idea?
Community care, and what I mean here is care that occurs outside the hospital setting, is responsible for 85 percent of cancer care in this country. Strong community and primary care — which was not my chief responsibility as an inpatient nurse and administrator — may allow patients to receive all their care in an outpatient setting. This allows patients to retain more of their lives during treatment.
Ensuring that community oncologists can provide the best possible care supports the Cancer Moonshot goal of making high quality oncology care accessible to every cancer patient, and I feel that this is critically important to our efforts.
A lot of people hear “cancer” and immediately think this is only for doctors and clinical researchers. But is there a way for D.C. residents to help support the Moonshot Program?
Of course there is a way to involve DC residents, and the entire country, in our work. We cannot achieve a Cancer Moonshot without the help of the people, without everyone doing what they can to beat this disease. I encourage everyone to visit cancer.serve.gov to learn about cancer-related volunteer opportunities in your area.
I like to close interviews on a personal note. Is there anything about you that few people know? Maybe a strange hobby?
It’s not as little known as I’d like it to be, but I’m a reality TV addict … much to my boyfriend’s chagrin.
