The Power of Patient Connection

Deb Schrag, MD, MPH, knows that a key member of a patient with cancer’s care team can—and should—be the patient.

“We’ve found, again and again, that patients with cancer want to help themselves, family members want to help themselves, but even if they can’t help themselves, and we can’t cure them, they want to help the next generation of patients,” said Schrag, the George J. Bosl Chair of the Department of Medicine at the Memorial Sloan Kettering Cancer Center in New York, New York. “People are generally altruistic and good, even when they’re going through a horribly stressful experience like treatment for metastatic cancer. I have been motivated by a desire to harness the power of patients and families to help accelerate the pace of discovery. Patient-reported data, patient-contributed biospecimens, patient-generated ideas, and enrollment in clinical trials are an underappreciated discovery engine.”

Schrag, a prolific researcher and study author who has spent 25 years caring for patients with gastrointestinal cancers, is among the leading investigators on an effort funded by the Biden administration’s Cancer Moonshot initiative for patients to report symptoms electronically.

But colleague Hannah W. Hazard-Jenkins, MD, FACS, director of the West Virginia University (WVU) Cancer Institute in Morgantown, said Schrag is considered a giant in the oncology field for reasons that go beyond her body of work. “It’s [being a] highly

personable, extraordinarily dedicated, very caring, and invested person that makes somebody a giant,” said Hazard-Jenkins. “It’s not by pure reputation, or by the number of articles that you publish, but she’s a combination—sort of a unicorn, so to speak—of being a giant in the traditional sense of publications and speeches, but she [also] is caring and compassionate. I think she’s moved and motivated by patients, which can be a unique quality.”

“A Relentless Pursuer of Truth”

Schrag, also a professor of medicine at Weill Cornell Medical College in New York, New York, served as the chief of the Division of Population Sciences at the Dana-Farber Cancer Institute and as a professor of medicine at Harvard Medical School in Boston, Massachusetts, until 2021.

In addition, she led Dana-Farber’s Program in Cancer Care Delivery Research and served as a principal investigator on the team that launched the American Association for Cancer Research’s Project GENIE, a publicly accessible cancer registry of clinico-genomic data made up of information shared among 19 cancer centers around the world.

Schrag is also a co–principal investigator with Symptom Management Implementation of Patient- Reported Outcomes in Oncology (SIMPRO) and a site principal investigator for eSyM, an electronic symptom management tool funded through a National Cancer Institute Moonshot Award.

“Deb is a great doctor, a great researcher, a great leader, a great mentor, and a great human,” said Ethan Martin Basch, MD, MSc, chief of the Division of Oncology at the University of North Carolina School of Medicine, a former mentee of Schrag’s who has collaborated with her on more than 40 publications.

“She sincerely cares about patients and about improving the world,” Basch said. “She has impacted cancer care in innumerable ways and has been influential elevating key issues in oncology into public discussion and scrutiny, usually before others recognize their importance, whether related to cost, value, equity, access, technology, or patient-centeredness. She seamlessly moves from the grand view of how systems work to granular machinations at the roots of problems. She is a relentless pursuer of the truth.”

Empowering Patients With Knowledge

Born and raised in New York, New York, Schrag was a medical student at the Columbia University College of Physicians and Surgeons there during the 1990s, amid both the HIV and multidrug-resistant tuberculosis epidemics.

“I did my medical training in New York City in that context, and I did my third-year medicine rotations at 2 hospitals. One was the old Roosevelt Hospital [now Mount Sinai West], which is right next to the theater district, and my very first patients had 3 diagnoses: PCP [pneumocystis] pneumonia, toxoplasmosis, and Kaposi sarcoma.

“Many of my patients were stagehands who worked in the nearby theater district near the hospital on 59th Street and Ninth Avenue in New York City. One of my formative experiences was treating patients with Kaposi sarcoma on clinical trials. Here was this very rare, understudied form of cancer, and the challenge of convening teams to formulate questions, design, and execute studies inspired me as a student. I saw the intersection of social determinants of health, health care policy, infectious disease, and cancer medicine and how much progress could be made through transdisciplinary collaborations. I also had a front-row seat to the power of patient activism during the height of the AIDS epidemic based on the pioneering work led by the Gay Men’s Health Crisis.”

A rotation as a medical student at Harlem Hospital also showed Schrag what she described as “the ravages of the HIV, crack [cocaine], and multidrug-resistant tuberculosis triple-demic and its intersection with poverty and pervasive inequities.

“When I was a student in the early ’90s, social determinants of health was not yet a term, but that’s what we were seeing, I would say, that the structural racism, disparities in access, and inequities were quite staggering and were a powerful motivation to pursue change.”

The impact of those foundational experiences can still be detected in Schrag’s work today.

“These experiences informed my interest (in) and commitment to public health and policy. Improving health outcomes involves so much more than the regimens we prescribe. It’s about how we deliver care to derive maximum benefit from the treatments,” she said.

Schrag is the principal investigator of the phase 2/3 PROSPECT randomized trial (NCT01515787), data from which was presented at the 2023 American Society of Clinical Oncology (ASCO) Annual Meeting Plenary Session in Chicago and published in the New England Journal of Medicine.^1,2

PROSPECT, with the participation of 1194 patients, demonstrated that neoadjuvant treatment with FOLFOX chemotherapy with selective use of chemoradiation was noninferior to the standard chemoradiation for patients with intermediate risk locally advanced rectal cancer. This practice-changing study provided an alternative curative intent treatment strategy for the approximately 20,000 patients diagnosed with intermediate-risk, locally advanced rectal cancer in the United States each year.

As part of PROSPECT, Schrag and Basch were among the coauthors of a study examining patient-reported outcomes during and after treatment published in June 2023 in the Journal of Clinical Oncology,³ continuing their long-standing work in the field of patient-reported outcomes (PROs).

“Deb and I are both oncologists with research programs focused on improving processes and quality of care,” said Basch. “We both believe deeply in the importance of the patient experience and voice. Early on in our collaborative work, we recognized that patients’ symptoms are often overlooked during cancer treatment and in clinical trials. The end result of this is that symptoms can go unaddressed during care, and are underdocumented during drug development studies. We embarked on a research journey to develop tools that improve detection of symptoms through direct reporting by patients—so-called ‘patient-reported outcomes.’

“For example, our initial work showed that important symptom side effects like nausea or pain are missed by clinicians up to half the time. Our later work showed that using patient-reported outcomes for monitoring closes that gap almost completely. Since then, we have created a standard tool for the National Cancer Institute called the PRO-CTCAE [Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events] that is now widely used in international drug development trials.

Other work showed that using patient-reported symptom monitoring during routine cancer care improves clinical outcomes. Now we are working on models for wider implementation of these tools. It has been gratifying to see increased incorporation of the patient voice into cancer care and clinical trial processes.”

“Some of the formative experiences that I had with patients is that we began to be able to help patients live longer, but we also wanted to help people live better,” Schrag said. “And we still had some residual sort of components of what I would call old, paternalistic-style medicine, where we were dictating things to people, not being as transparent.…I think it was seeing patients quit treatment, seeing some of the fear of treatment (that left me) feeling like we could make more progress if we demystified cancer treatment by explaining things more clearly, by engaging patients better, empowering them with knowledge, and by harnessing their talent and their energy. It wasn’t that way when I started out, but now it is, and I am so proud to have been part of that journey.”

The Power of Thinking Locally

Schrag’s team of principal investigators on the SIMPRO/eSyM program includes Michael Hassett, MD, MPH, of the Dana-Farber Cancer Institute; Raymond Osarogiagbon, MD, of Baptist Cancer Center in Memphis, Tennessee; and Sandra L. Wong MD, MS, chair and professor of surgery at the Geisel School of Medicine at Dartmouth in Hanover, New Hampshire. The team collaborated to harness the power of the electronic health record (EHR) and patient engagement to improve cancer care delivery, and the system that the team built is now integrated into Epic Systems’ EHR and available to all health systems that rely on that system.

“What is so compelling about our work with PROs is how to use them to better engage patients in their own care, improve the management of patients’ symptoms (while they are being treated with chemotherapy or as they recover from cancer surgery), and ultimately improve cancer care,” said Wong, a SIMPRO co–principal investigator and site principal investigator for eSyM.

The eSyM program includes the involvement of half a dozen cancer centers across the country— and Schrag, a New Yorker who spent years studying and teaching at Harvard, understands the importance of care providers maintaining a local connection with patients.

“If you’re in Massachusetts living in (the Boston neighborhood of) Roslindale, there’s a big difference between Roxbury and West Roxbury, and understanding something about those communities matters. Jamaica Plain matters,” said Schrag. “And in New York City, living in Chelsea or the West Village is not the same as living in East New York, which is not the same as living in Astoria.

“So I think having a connection to where people live and work builds trust that leads to enrollment in practice-changing studies and accelerates discovery.”

Hazard, the WVU physician who is a site principal investigator for eSYM, agreed.

“Even though we’re rural Appalachia, (in the program) we have rural New Hampshire, we have lots of other rural regions, and each one of us are very different,” Hazard said. “And part of it is the philosophy of the community and the culture of that area. I think it speaks to (Schrag’s) and others’ credit of recognizing the value of the culture and how you adapt a program to meet the specific needs of a community.”

“What is so great about Deb is her unique ability to always link things back to patient care,” said Wong. “Every aspect of her research is around improving patient care and the delivery of care. With PROs, it was not just about collecting the data; it is about the interface with patients, it is about what we do with the data to improve care in the short term, it is about putting the data in the hands of the clinicians taking care of patients.”

Clinicians referring a patient to MSK can do so by visiting msk.org/refer, emailing referapatient@mskcc.org, or by calling 833-315-2722.

References

1. Schrag D, Shi Q, Weiser MR, et al. PROSPECT: a randomized phase III trial of neoadjuvant chemoradiation versus neoadjuvant FOLFOX chemotherapy with selective use of chemoradiation, followed by total mesorectal excision (TME) for treatment of locally advanced rectal cancer (LARC) (Alliance N1048). J Clin Oncol. 2023;41(suppl 17). Abstract LBA2. doi:10.1200/JCO.2023.41.17_suppl.LBA2
2. Schrag D, Shi Q, Weiser MR, et al. Preoperative treatment of locally advanced rectal cancer. N Engl J Med. 2023;389(4):322-334. doi:10.1056/NEJMoa2303269
3. Basch E. Dueck AC, Mitchell SA, et al. Patient-reported outcomes during and after treatment for locally advanced rectal cancer in the PROSPECT Trial (Alliance N1048). J Clin Oncol. 2023;41(21):3724-3734. doi:10.1200/ JCO.23.00903