Listening to the Voice of the Patient: How the Cancer Moonshot is Prioritizing Patient Care

By Anabella Aspiras, Director of Patient Engagement, White House Cancer Moonshot Task Force

Aspiras (third from left) and Dr. Biden meet with patients. Credit: PatientsLikeMe.

Of the many words oncology patients use to describe their experience navigating the healthcare system, perhaps the most upsetting is “ignored.” As Director for Patient Engagement for the White House Cancer Moonshot Task Force, I endeavor to make the patient’s voice heard — loudly and poignantly clear. To this end, I consider my foremost responsibility to ensure that all our actions as part of the White House Cancer Moonshot are anchored to the patient care experience, and that patients and providers alike are established, valued, and heard participants in our efforts.

To accurately and meaningfully represent the patient voice, I have connected with patients directly and with the people who know them best, including oncologists, nurses, caregivers, community health professionals, loved ones, and patient advocacy groups. In alignment with the priorities of the Cancer Moonshot, and in partnership with oncology patients and their dedicated providers, my work centers on four main areas — areas where a complexity of social, financial, emotional, access, and regulatory issues can pose barriers for patients:

  • Addressing cancer disparities. To support the Cancer Moonshot goal of ending cancer as we know it, our efforts must address the reality that for many minority and medically-underserved communities, disparities exist and persist across the continuum of care. Inequities range from prevention and early detection to accessing treatment advances, and the impetus to improve cancer outcomes among minority and underserved populations is deeply felt in our work.
  • Enhancing community oncology care. The overwhelming majority of cancer care takes place at the community level, yet too often where an oncology patient lives may determine the quality of care they receive. Enhancing community cancer care is critical to our efforts to ensure that quality oncology care reaches every cancer patient.
  • Increasing clinical trial participation. Understanding barriers for patient and provider participation in cancer clinical trials and creating pathways to alleviate these obstacles are critical to the Cancer Moonshot. Enhancing accrual and retention of underrepresented and minority groups in clinical trials is a key part of accelerating progress in cancer prevention, diagnosis, and treatment.
  • Understanding and advancing cancer survivorship. Particularly with pediatric and young adult cancers, survivorship can mean a host of treatment-related morbidities. Our efforts aim to ensure research investment in better treatments that will improve survivorship care and quality of life.

Key to the Moonshot’s goals are understanding and addressing these challenges, and identifying what solutions could look like. My work has taken me from Pennsylvania to Texas to the Pacific Northwest, and connected me with a range of healthcare professionals from community oncologists to community health workers.

The reality is that while tremendous work is taking place in oncology care, cancer patients and providers face numerous challenges.

Providers are challenged by relentless demands on their time, both in terms of patient care responsibilities and administrative tasks. Their efforts to address the person beyond the patient — including identifying with patients the goals of treatment and earlier introduction of palliative care — are too often thwarted by limited time and staff resources. Patients are acutely aware of the fear and countless unknowns that accompany a cancer diagnosis, and their experience is compounded by the myriad challenges of accessing compassionate care in a fragmented and overburdened healthcare system.

The situation is challenging, but not impossible to improve. While part of the goal of the Cancer Moonshot is to accelerate cancer research toward cancer cures, we are also wholly dedicated to the patient, and support all efforts to transform cancer care today. By aligning our efforts with the experiences of cancer patients and front-line providers, we will ensure that the decade of progress we seek to achieve in five years is felt in communities right now. Every day, patients and healthcare professionals change cancer as we know it — by making cancer treatment less terrifying and by giving each of us a reason to hope. My role is to ensure that we stay close to the patients and providers who are the face of cancer because theirs is arguably the most important focus of our efforts.

Author’s note: I am grateful to all the organizations that have connected with me about their work to improve cancer care, prevention and outcomes including the Ann B. Barshinger Cancer Institute, the South Puget Intertribal Planning Agency (pictured), the Baylor College of Medicine Community Network for Cancer Prevention and Harris Health System, c-CARE and the Georgia Cancer Center, the Oncology Nursing Society, PatientsLikeMe (pictured), the Association of Community Cancer Centers, and countless more patients, oncologists, social workers, caregivers, clinical navigators, and patient advocacy groups who support the success and application of the Cancer Moonshot effort.

(Left to right) Tanya Brown, Joan Simmons, Aspiras, Carmen Kalama, and Sarah Zephier at the South Puget Intertribal Planning Agency (SPIPA). The SPIPA Cancer Programs have worked in partnership with the South West Washington Tribal Communities for over 20 years on culturally-appropriate patient engagement for cancer prevention and control. Aspiras discussed SPIPA’s community engagement and empowerment efforts with front-line and administrative staff for SPIPA’s cancer programs. August, 2016. Credit: Personal photo.
Members of the Oncology Nursing Society visited the White House to discuss the work of the Cancer Moonshot in support of improving the cancer patient experience. This included enhancing oncology care quality and access and the critical role of front-line providers in achieving lasting impact in these areas. September 2016. Credit: Oncology Nursing Society.

Anabella Aspiras is the Director for Patient Engagement for the Cancer Moonshot Task Force. She joins the team from her previous role as the Patient Services Administrator for Oncology at New York-Presbyterian Hospital. Anabella has worked as a Registered Nurse in critical care, emergency medicine, and vascular access. Her clinical work took her to Haiti twice following the 2010 earthquake, and most recently to Sierra Leone in 2015 to assist with Ebola containment efforts.