Cancer Care Delivery Research Program: Reconditioning the Oncology Ecosystem

October 17, 2018

The burden of cancer is increasing, with over 1.7 million new cases estimated in 2018 and roughly 15 million Americans alive today with a history of cancer. As crucial and welcome advances in precision medicine such as screening, and novel diagnostics and therapies in oncology gain momentum, the oncology ecosystem is under pressure, making delivery of high-quality care increasingly complex. In fact, a recent Institute of Medicine report noted a “crisis in cancer care delivery.” The members of the Cancer Care Delivery Research (CCDR) program at DF/HCC are picking up this gauntlet. They are reshaping the oncology ecosystem using innovative approaches to generate more patient-centered, accessible, cooperative, cost-effective, and evidence-based blueprints for cancer care delivery.

“The goal of our program is to try to improve the care that is delivered to the patients diagnosed with cancer in Massachusetts and elsewhere,” Nancy Keating, MD, MPH (BWH), co-leader of the CCDR program said, “Program members are doing some really innovative work using eHealth (web-based applications) and mHealth (mobile applications) platforms to improve symptom management, outcomes, and quality of life (QoL).” 

Automatic integration. Web-based Apps. Machine Learning. Gamification - Cancer Care Delivery Lexicon, Upgraded

Information and communication technologies are ubiquitous in every aspect of modern life, and their entry into the oncology ecosystem is no less game-changing. CCDR program members are leading paradigm-shifting eHealth and mHealth studies throughout the cancer care continuum.

Deborah Schrag, MD, MPH (DFCI), CCDR program leader, is leading a National Cancer Institute’s Beau Biden Cancer Moonshot Initiative-funded study focused on improving symptom management during and following cancer treatment. The study will deploy a new mHealth model, replacing the current paradigm of predominantly patient-visit-reliant symptom management protocols. Jennifer Wind, Program Manager at Dana-Farber Cancer Institute’s Center for Outcomes and Policy Research, who is working on the study with Dr. Schrag said, “The crux of this study is a mobile application intended to serve as a portable system for patient-reported symptom data and clinician-directed symptom management tools.” The app will periodically solicit and gather input from the patient regarding their specific symptoms and severity and then provide guidance, via detailed instructions or short videos, on coping strategies and additional advice tailored to the symptom report. The symptom profile and timing of data collection are customizable. The system will automatically integrate data into the electronic health records (EHR) system provided by EPIC, collaborators in the app development process. Clinicians can access patient-specific data and provide prescriptions, advice, and direct feedback, as warranted. The system also has a repository of clinically-relevant information, such as guideline-recommended treatments and strategies for managing specific symptoms. 

“With this new system of electronic patient-clinician communication that is seamlessly and automatically integrated into EHR,” Wind said, “we hypothesized that clinicians will be able to anticipate, monitor, and prevent cancer-related symptoms before they escalate. The likely improvements in outcomes include fewer ER/ED visits, fewer hospitalizations, reductions in symptom-associated treatment delays, enhanced patient self-efficacy, reduced symptom burden, and increased patient satisfaction with care.”

The initial deployment of this multi-site initiative, a partnership with six health systems representative of generalized care centers and rural community hospitals across the US, will focus on solving two common problems in oncology. Following cancer surgery, patients frequently return to the hospital or emergency room and, in many centers, readmission rates are as high as 20%. Similarly, for patients receiving chemotherapy, the rate of potentially avoidable emergency room visits is high. By implementing routine symptom management tracking the study aims to keep patients out of the hospital—a goal which benefits everyone. 

Empowering Stakeholders Using Telemedicine – Game On!

Jennifer Temel, MD (MGH), CCDR program co-leader and Cancer Outcomes Research Group member at MGH, described how their ongoing work is “addressing ways to integrate palliative/supportive care with treatment and devising interventions for patients and their caregivers to improve outcomes, including QoL and physical and psychological wellbeing.”

In a study funded by the Patient-Centered Outcomes Research Institute (PCORI), Temel and her colleagues are utilizing telehealth with virtual visits to deliver palliative care for patients diagnosed with advanced lung cancer and comparing this model to in-person palliative care visits. The research team is working with 20 clinics across the US to enroll 1,250 patients with a recent diagnosis of advanced lung cancer, and their caregivers. 

In another study, Temel and colleagues are using mHealth to educate leukemia patients about their diagnosis and treatment and to provide strategies to help them cope with their new cancer diagnosis. “This approach is tailored for patients with leukemia, as they are often hospitalized for extended periods, and may be more susceptible to feelings of isolation and boredom,” Temel said. The mobile app is designed as a game in which patients complete tasks which provide education and support to find their way through a forest and “get home,” which mirrors their personal goal of completing cancer therapy and returning to their home. 

Temel and colleagues are also using an mHealth approach to tackle sexual dysfunction in cancer patients, an under-addressed and under-treated issue. “Previous studies have shown that person-to-person interventions to alleviate sexual dysfunction are successful. Sexual dysfunction might be another aspect of supportive care that would translate well into an mHealth approach. Patients and their caregivers or partners might respond and utilize a mobile app-based intervention for sexual dysfunction better in the privacy of home, in a setting and at times that are convenient to them,” Temel said.

Advances in apps, algorithms, and games can also help clinicians identify patients at higher risk of cancer or treatment-related effects. A collaborative study from Temel, CCDR program member Ziad Obermeyer, MD (BWH), and colleagues aims to develop an algorithm for adverse event risk prediction in cancer patients using machine learning strategies. “It addresses one of the most difficult questions oncologists face - how to identify patient populations, especially in geriatric populations, who are at greater risk of adverse events,” Temel explained. 

Illustrating the breadth of ongoing work Keating pointed to other DF/HCC examples of eHealth interventions by Mara Schonberg, MD, MPH (BIDMC), who is focusing on individualization of decisions regarding mammography screening for women over the age of 75, and Charlotta Lindvall, MD, MPH (DFCI), who is utilizing machine learning tools to develop methods to characterize patterns of care for patients at the end of life.

The Patient’s Voice- The First Principle in Patient-Centered Cancer Care

 A central theme in promoting patient-centered cancer care is to identify ways to amplify the patient’s voice. A first-hand description of the patients’ experience is particularly important and challenging in pediatric oncology. “Children typically do not elaborate to grown-ups; that is why we felt that using innovative ways to help them articulate what was really going on inside their bodies would be beneficial,” noted Joanne Wolfe, MD, MPH (DFCI). Wolfe and colleagues generated a landmark system for symptom and QoL data collection, the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST), a web-/app-based system that allows children with advanced cancer to report their experience directly based on standardized instruments, the Memorial Symptom Assessment Scale and PedsQoL, that have been developmentally-adapted. The system automatically scores survey data and captures symptom severity. Wolfe and colleagues found that PediQUEST was well-received, helped alter physician practices, and improved QoL outcomes in subgroups of children with advanced cancers, especially in adolescents and those with a longer course of survival.

“When we published the [PediQUEST] results, we felt that we needed to strengthen the intervention, because it was not effective across all the children randomized for that intervention,” said Wolfe, explaining the need for and genesis of the second iteration, PediQUEST Response. Wolfe and colleagues also found that parent-reported outcomes were improved with palliative care services, including reduced suffering from two common symptoms, pain and shortness of breath, in the last month of life. Moreover, qualitative studies led by Wolfe showed that both families and oncology clinicians normalized suffering, taking distress as an inevitable effect of the pediatric cancer care experience. The PediQUEST Response will, Wolfe added, “evaluate the combined effect of having children report on their well-being and having the palliative care team attend to their sense of distress, as an added layer of support in addition to their primary oncology team.”

“There are some symptoms that I would call invisible, which are often the markers of psychological distress that the kids experience. The [PediQUEST] system tends to amplify that piece of things in an important way,” noted Wolfe. Given the tech-savviness and app-responsiveness of children today, the availability of such a system for tracking and managing their cancer care experience is an invaluable addition to the pediatric oncology armamentarium.

Doing More with Less: Evaluating A CMS Oncology Care Model 

Financial costs associated with cancer care are significant, to patients, families, healthcare systems, and society alike; total US cancer-related healthcare expenditure was nearly $88 billion in 2014. Keating is a member of the evaluation team that is assessing a new oncology practice model designed by the Innovation Center of the Center for Medicare and Medicaid Services.  

“The CMS Oncology Care Model is a payment and delivery model that CMS is testing to see if they can improve the quality of care for patients with cancer undergoing chemotherapy, while maintaining or decreasing spending or care costs. About 190 practices across the country who treat about a quarter of all Medicare beneficiaries with cancer are participating. The aim is to make care more accessible and patient-centered,” Keating stated. 

The CMS oncology Care Model includes two main components: a revised practice design, focused on expanding access to care, providing navigation services, improving guideline-adherence, educating patients regarding their cancer diagnosis and treatments and the costs of cancer treatment and care, and expanding palliative and survivorship care services; and financial incentives, based on improvements in care costs over the historical benchmarks and cost projections set by CMS. “If the practices can provide care at cost that is below the benchmark minus a discount to CMS and provide high quality care to their patients, then they are eligible for a performance-based payment,” Keating said, describing the financial incentive process.

Over the TOPS- Training in Oncology Population Sciences

CCDR program members wear many hats - oncologists, research scientists, policy advisors, and mentors. The Training in Oncology Population Sciences (TOPS) T32 program, led by Schrag and Keating, capitalizes on the mentorship role of CCDR members. TOPS is a training program for postdoctoral fellows, aimed at providing fellows skills crucial for addressing the challenges and opportunities in cancer care. Applications for the 2019 TOPS program, conducted each year in collaboration with 39 faculty from the seven institutions of DF/HCC, are now open and due by January 4, 2019.

Of All the Forms of Inequality, Injustice in Health Is the Most Shocking and Inhuman– Martin Luther King, Jr.

Inequality in cancer care delivery is driven partly by disparities in access to care, muting of the patients’ voice, and staggering cancer-related psychological and financial burdens. The examples of the studies from CCDR program members highlight how amplifying the patient’s voice, expanding access to supportive and palliative care services, and assessing novel payment and care models can help address these imbalances. 


Written by Krithika Subramanian