Assessing and Advancing Progress in the Delivery of High-Quality Cancer Care Proceedings of a Workshop (2024) / Chapter Skim
Currently Skimming:
Proceedings of a Workshop
Proceedings of a Workshop
Pages 1-68
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 1... ...
. In 2013, an IOM consensus report revisited the issue of quality in cancer care and concluded that the cancer care delivery system was in a state of crisis.
|
From page 2... ...
Robert Winn, director of the Virginia Commonwealth University Massey Cancer Center and chair of the National Cancer Policy Forum, said this workshop was designed to: • Enable the cancer community to gauge progress on implementation of the 2013 report recommendations; • Discuss persistent challenges in achieving excellent and equitable cancer care; • Highlight aspects of cancer care that have changed over the past decade that might require new strategies for quality improvement; and • Explore opportunities to advance progress on the delivery of high-quality cancer care. Winn said that discussions about cancer care frequently focus on patient access.
|
From page 3... ...
• Developments since 2013 include new treatments and advances in precision medicine; practice consolidation and changes in care delivery; a decrease in the number of oncology clinicians; worsened clinician well-being and practice sustain ability; continued implementation of the Affordable Care Act with increased patient access to health insurance; increased national attention on health equity; increased need for rural health care; and issues around the use of electronic health records (EHRs) in cancer care.
|
From page 4... ...
(Keating) Facilitating Evidence Generation • Cancer therapies need to be evaluated in the populations who will use them, yet a lack of equitable representation in cancer clinical trials persists.
|
From page 5... ...
(Zon) Ongoing Workforce Issues • Comprehensive demographic data for the oncology workforce are lacking, especially for specialties, team-based care, and advanced practice providers.
|
From page 6... ...
• Enable rural and underserved community access to cancer care and clinical trials. (Mooney, Winkfield)
|
From page 7... ...
• Redesign the EHR to provide more useful information to support patient care; improve clinical workflow and clinician well-being; and generate evidence to support a learning health system. (Gralow)
|
From page 8... ...
The committee identified six key components of a high-quality cancer care delivery system (Figure 1)
|
From page 9... ...
A High-Quality Cancer Care Delivery Syste·m Evidence Base to Inform Clinical Care Workforce Patients 1 Quality Measurement Accessible, Affordable, {I nclud"ng patient High-Quality Care outcomes and costs) Learning Health Care Information Tech11ology System Performance Improvement and New Payment Models PREPUBLICATION COPY -- Uncorrected Proofs FIGURE 1 Conceptual framework for a high-quality cancer care delivery system Source: Ganz presentation, October 5, 2023, and IOM, 2013.
|
From page 10... ...
. The 2013 IOM report concluded that "all participants and stakeholders must reevaluate the current roles and responsibilities in cancer care and work together to develop a high-quality cancer care delivery system." Ganz stressed that "working toward this shared goal, the cancer care community can improve the quality-of-life and outcomes for people facing a cancer diagnosis." Changes in the Landscape of Oncology Care Since 2013 Robin Zon, president-elect of ASCO,3 discussed developments in cancer treatment, care delivery, and technology since the 2013 IOM report.
|
From page 11... ...
However, she noted that efforts to extract real-world data from electronic health records (EHR) continue to be hampered by interoperability challenges across systems, including the need for greater use of structured data elements.
|
From page 12... ...
Again, however, interoperability challenges persist, and "the vision of a learning health care system has been slower to materialize than hoped," Zon said. Ongoing Developments Implementation of provisions in the Inflation Reduction Act6 aims to lower drug costs and patient out-of-pocket spending (e.g., a yearly cap on patient outof-pocket spending for Medicare Part D prescription drugs)
|
From page 13... ...
. 12 The full report is available at https://canceradvocacy.org/2023-state-of-cancer survivorship-survey/ (accessed December 12, 2023)
|
From page 14... ...
Inequities in Cancer Care Although there have been many advances in cancer care, inequities in care persist and African Americans have a higher death rate from cancer than other racial and ethnic groups, said Lori Pierce, professor of radiation oncology and vice provost for Academic and Faculty Affairs at the University of Michigan. Inequities in care are associated with social determinants of health, as well as the lack of racial and ethnic diversity in clinical trials (Aldrighetti et al., 2021; Duma et al., 2018; Loree et al., 2019)
|
From page 15... ...
have developed a research site self-assessment designed to help sites identify and address barriers to equity, diversity, and inclusion in their clinical research.14 The ASCO Road to Recovery report also highlighted recommendations to improve equity in cancer care, which include (Pennell et al., 2021) : • Standardizing and recording data elements that inform issues around disparities in access to care; • Improving patient access through telemedicine; • Advocating for formal training in cultural competency for clinicians and trainees; • Promoting a more diverse workforce; and • Focusing on clinician and patient wellness.
|
From page 16... ...
. 16 See https://www.mskcc.org/research-programs/health-policy-outcomes/cost-drugs (accessed December 12, 2023)
|
From page 17... ...
. Klepin discussed the importance of increasing the participation of older adults in cancer clinical trials and highlighted forward momentum since the 2013 IOM report, as follows: Increased awareness.
|
From page 18... ...
Klepin said that at her cancer center, incentives, requirements, and advocacy have each had some impact on increasing the enrollment of older adults in cancer clinical trials, and quality measures have promoted the uptake of guideline-based care by practices. Pierce said that Blue Cross and Blue Shield of Michigan funds collaborative quality initiatives (CQI)
|
From page 19... ...
Beverly Canin said that when she was diagnosed with breast cancer in 2000, she reviewed the literature, talked with other cancer survivors, and then shared her concern with her oncologist that the chemotherapy they recommended "would not sufficiently protect me from recurrence to be worth the damage to my immune system." The oncologist dismissed her concern and told her she needed che motherapy. Under those circumstances, Canin said she "made the difficult decision not to do any toxic treatment." She said this experi ence ignited her passion for patient advocacy.
|
From page 20... ...
Patients need to be confident and proactive in engaging with their clinicians because the patient knows their body and their personal goals best, Canin said. Sarah Greene, who was diagnosed with stage 3C endometrial cancer in 2022, has been a cancer health services researcher for more than 25 years with expertise in learning health systems, health commu nication, and electronic health data, which provided important insights to navigate the complexity of her cancer care.
|
From page 21... ...
She emphasized the need to address issues of affordability and equitable access to "practice-changing" breakthrough treatments, and said she has persistent worries that she will lose access to the immunotherapy. Relating her personal experiences to the recommendations of the 2013 IOM report, Greene said she "was an engaged patient, .
|
From page 22... ...
. Mortality rates for breast cancer continue to decline, but Siegel stressed that racial disparities persist with 40 percent higher mortality rates among Black women compared to White women despite lower breast cancer incidence in Black women.
|
From page 23... ...
.25 Bhatnagar described two studies designed 23 See https://www.cdc.gov/minorityhealth/publications/health_equity/index.html (accessed December 12, 2023)
|
From page 24... ...
An annual workshop on Clinical Outcome Assessment in Cancer Clinical Trials also focuses on the use of PRO measures in cancer clinical trials and includes patients as panelists.26 He added that OCE issued a draft Guidance for Industry in 2021 on incorporating PROs in cancer clinical trials.27 Other opportunities for patients to engage with FDA include "patient listening sessions, externally led patient-focused drug development meetings, and the FDA representative program," Bhatnagar said.28 He also discussed Project Patient Voice, a website that will share PRO data collected in clinical trials to aid in shared decision making for approved cancer therapies.29 Developing the Infrastructure for Sustainable Models of Cancer Care Delivery Cancer symptom management remains suboptimal, and many patients return to the clinic or the emergency department to address poorly controlled symptoms, said Kathi Mooney, co-lead of Cancer Control and Population Sciences at the Huntsman Cancer Institute and professor of nursing at the University of Utah. However, advances in technology are being leveraged to gather and report symptom data to the patient's care team, and studies have shown that symptom management based on monitoring of PROs improves outcomes (Basch et al., 2016, 2017; Mooney et al., 2017)
|
From page 25... ...
Facilitating novel, home-based models of cancer care will require adapting the current infrastructure, Mooney concluded. However, "health care systems are very rigidly organized and regulated," she said, and new incentives, pragmatic trials, and implementation science are needed to overcome clinician, health system, and regulatory barriers and to promote practice changes that improve patient access to cancer care.
|
From page 26... ...
And because rates of tobacco use are high in the Veteran population, VHA has implemented comprehensive, evidence-based tobacco cessation services and access to treatment. VHA Cancer Care Delivery Programs List elaborated on five VHA oncology care delivery programs that facilitate equitable access to high-quality, patient-centered cancer care.
|
From page 27... ...
program works to facilitate the enrollment of Veterans in NCI-supported cancer clinical trials and to expand the number of VHA Medical Centers participating as trial sites. Delivering Psychosocial Care to Cancer Survivors Julia Rowland, senior strategic advisor at Smith Center for Healing and the Arts, said psychosocial problems can "significantly increase the national burden of cancer," and have been associated with decreased pursuit of care, treatment adherence, chemotherapy effectiveness, and length of survival, as well as increased symptom burden, risk of suicide, and cost of care.
|
From page 28... ...
Although the collection and use of cancer data to inform care has expanded, Rowland said consensus is needed on common data elements for psychosocial care to be collected for all patients in clinical practice and clinical trials. Translation of evidence into clinical practice.
|
From page 29... ...
This needs to be resolved, she said, so that psychosocial care clinicians who have capacity can provide care to underserved areas. WORKFORCE CONSIDERATIONS: REACHING FOR THE QUADRUPLE AIM The second component of a high-quality cancer care delivery system identified in the 2013 IOM report was "an adequately staffed, trained, and coordinated workforce." A wide range of health care professionals, both within and beyond the field of oncology, can be involved in a patient's cancer care.35 Many speakers discussed cancer care workforce considerations in the context of achieving the Quadruple Aim of improving population health, improving patient experience, reducing costs, and "improving the work life of health care providers, including clinicians and staff " (Bodenheimer and Sinsky, 2014)
|
From page 30... ...
Many workshop speakers discussed opportunities to promote collaborative care for patients living with and beyond cancer, said Nekhlyudov, spanning topics such as: • Workforce education and training, including interprofessional team based care and competencies for cancer survivorship care; • Developing and implementing guidelines for referring patients to "super specialists" (e.g., an onco-cardiologist) for addressing adverse health consequences of cancer and its treatment; • Developing a coordinated, collaborative, team-based care approach to identify needs of cancer survivors and determine appropriate interventions; • Optimizing efficiency of care across the entire team; • Collecting and timely disseminating high-quality EHR data, including actionable patient-level data; • Developing policies and interventions that promote health equity; and • Advocating for legislative solutions.
|
From page 31... ...
Radiation oncology practices are also consolidating and moving to urban areas and academic medical centers, Hendricks said. In hospice and palliative medicine, there are now more women than men in the under 44 age group and more minority physicians compared to hematologic and medical oncologists, she said.
|
From page 32... ...
61, available at https://www.hhs.gov/sites/ default/files/surgeon-general-social-connection-advisory.pdf, (accessed December 12, 2023)
|
From page 33... ...
. Promoting and Sustaining Diversity in the Oncology Workforce Although diversity among incoming medical school classes is increasing, unconscious biases persist, said Narjust Florez, associate director of the Cancer Care Equity Program at Dana Farber Cancer Institute, emphasizing that "diversity without inclusion equals trauma." Non-inclusive practices impact not only racial and ethnic minority students, but also LGBTQ students, first generation students, students with disabilities, and students from rural areas, said Florez.
|
From page 34... ...
. From a survey of nurses and prescribers at 29 community-based medical oncology practices in Michigan, Friese found that as the use of EHRs for sharing of information increased, the communication 42 See https://twitter.com/latinasinmed?
|
From page 35... ...
In another study, clinicians and patients were surveyed to identify key concerns in care delivery. Clinicians then attended a workshop where they used data from their own practices to identify strategies to improve the patient experience (Blok et al., 2023)
|
From page 36... ...
An engaged workforce is needed to overcome challenges to the adoption of AI in health care, which Robinson said, "are significant but not insurmountable." Improving Patient-Centered Care and Clinician Well-Being Many speakers discussed the challenges clinicians face in striving to provide high-quality, patient-centered cancer care in the face of ever-increasing task loads and the growing complexity of care. Subbiah said the lack of implementation science data on the delivery of patient-centered care places the burden on the clinical teams to figure it out in an ad hoc manner.
|
From page 37... ...
Panelists discussed topics such as the learning health system, the role of health insurers and value-based payments models, community oncology practices, primary and specialty care, and cancer clinical trials. PREPUBLICATION COPY -- Uncorrected Proofs
|
From page 38... ...
A key challenge to implementing a learning health system, however, is integrating patient data from numerous sources. One survey found that only 15 percent of health care organizations have full capability to access and use diverse patient data for rapid decision making.45 Building a Learning Health System at Northwell Health Cancer Institute Alfano shared three lessons learned from implementing a learning health system at Northwell to transform care and improve health equity.
|
From page 39... ...
. in a care relationship with accountability for quality and total cost of care by 2030."48 Keating shared her perspective on lessons learned from CMS oncology payment models.49 46 See https://cancercontrol.cancer.gov/brp/research/team-science-toolkit/about-scits/ studying-team-science (accessed December 12, 2023)
|
From page 40... ...
The final report is forthcoming, but Keating said that by the end of 2021, the OCM included 201 oncology practices and 10 payers, and had completed more than 1.2 million patient care episodes (chemotherapy and related care provided over a six-month period) (Oncology Care Model Evaluation Team, 2023)
|
From page 41... ...
She also noted that reliable measures of quality delivered in oncology practices still need to be developed. Health Insurer Perspective on Cancer Care Delivery Transformation Innovative cancer therapies are being introduced at an increasing pace, which is helping many people to live longer with cancer, said Lucy Langer, national medical director of oncology and genomics at United Health Care.
|
From page 42... ...
health care system is not keeping up with the complexities of the oncology care delivery ecosystem." Disruptive solutions are needed to ensure patients receive care that is of high quality and value, and she advocated for "paying oncologists for the work that they do" rather than relying on drug profit margins; "rewarding activities that improve quality and access;" and "realigning benefit design, provider incentives, and quality metrics." Cancer Care Delivery in Community Practice Most Americans receive their cancer care at community oncology practices, said Natalie Dickson, president and chief strategy officer for Tennessee Oncology. Community practices deliver comprehensive, personalized, convenient, coordinated, and often more affordable cancer care close to where the patient lives.
|
From page 43... ...
. • Supporting innovative, evidence-based treatments (e.g., prioritizing clinical trials that could inform new care pathways and guidelines)
|
From page 44... ...
. Cityblock offers the collaborative care model, an evidence-based model integrating primary and behavioral health care, which she said has been shown to improve patient access and clinical outcomes, control costs, and increase patient satisfaction.
|
From page 45... ...
Cardinale Smith, chief medical officer at the Tisch Cancer Institute, vice president of Cancer Clinical Affairs, and chief quality officer for oncology for the Mount Sinai Health System, said that practices affiliated with the Association of American Medical Colleges did communicate and share data through AAMC, which she said was very helpful. The Role of Clinical Trials in Cancer Care Many workshop speakers discussed the role of clinical trials in cancer care.
|
From page 46... ...
. EVIDENCE GENERATION TO INFORM ONCOLOGY CARE Many speakers discussed advances in research that have changed cancer care delivery, as well as opportunities to leverage evidence generation to support highquality, equitable cancer care for all patients.
|
From page 47... ...
New trial designs include pragmatic trials, umbrella trials,55 and basket trials,56 and FDA has issued guidances on the use of real-world data in regulatory decision making. Gralow added that ASCO and ACCC have jointly developed resources57 to help increase enrollment of racial and ethnic minority populations in clinical trials, including implicit bias training and a research site self-assessment tool.
|
From page 48... ...
The 2013 report also called for CMS to create incentives for clinicians to participate in a learning health system, which Miller said has not occurred. He suggested HHS clarify the extent to which the data sharing actions of a learning heath system are governed by the Privacy Rule promulgated under the Health Insurance Portability and Accountability Act (HIPAA)
|
From page 49... ...
Rudy Distinguished Chair in Translational Cancer Research at the Cleveland Clinic, discussed the lack of racial and ethnic diversity in clinical trials. For example, participation of African American and Hispanic individuals in clinical trials declined between 2003 to 2016 (Duma et al., 2018)
|
From page 50... ...
Darien and Adjei both emphasized the need for a trial population to be representative of those impacted by the disease in an effort to generate highquality evidence to inform patient care. Adjei noted that FDA has issued draft guidance for industry on intentional planning for diverse enrollment in clinical trials,64 and he and Claire Snyder, professor of medicine and oncology at the Johns Hopkins School of Medicine, said that trial eligibility criteria are being broadened and simplified (e.g., to include patients with comorbidities)
|
From page 51... ...
Florez agreed and emphasized that recruiting patients of diverse backgrounds is possible; she has been successful in enrolling diverse populations in clinical trials by being a part of the community and engaging with members of her community in the clinic and at health fairs. Advancing Equitable Implementation of Evidence-Based Oncology Care Katharine Rendle, assistant professor of family medicine, community health, and epidemiology in the Perelman School of Medicine at the University of Pennsylvania, said that although there have been advances in translational science since the 2013 IOM report, a recent study found that the average lag time from "landmark publication to implementation" of an evidence-based oncology intervention was only slightly reduced from 17 years to 15 years (Khan et al., 2021)
|
From page 52... ...
Kluetz agreed and said the pace of cancer treatment research has rapidly increased and health care delivery research is not keeping up. Gralow and Robin Yabroff, scientific vice president of Health Services Research at the American Cancer Society, discussed the concept of a "Cancer Groundshot" that has been proposed in tandem with the Cancer Moonshot (see Gyawali et al., 2018)
|
From page 53... ...
IMPLEMENTATION SCIENCE LINGO APPLIED TO ONCOLOGY CARE with whom & where stuff we do to help them how much & how how well the thing the thing they do the thing do (or not do) the thing well they do the thing works in practice Evidence-Based Context Implementation Implementation Effectiveness Intervention Patients & Clinicians Strategies Outcomes Outcomes Molecular testing Communities Patient navigation Reach Stage Immunotherapy Hospitals Clinical champions Adoption Recurrence Oral anticancer therapies Insurers Leadership endorsement Fidelity QoL Survivorship care Policymakers Targeted messaging Cost Symptom Burden Tobacco cessation support Peer support Equity Survival PREPUBLICATION COPY -- Uncorrected Proofs Homes FIGURE 2 Applying implementation science to oncology care.
|
From page 54... ...
The evidence needed to answer such questions is commonly generated in traditional randomized clinical trials, which Kluetz said are "large, lengthy, and expensive" and can place significant burden on the clinical staff and the patients who participate. He highlighted three approaches FDA is pursuing to optimize and expand options for collecting high-quality evidence: • Leveraging appropriate design elements (e.g., master protocols, adaptive designs, common controls, decentralized trial elements)
|
From page 55... ...
A challenge, he acknowledged, is data management across disparate EHR systems. Ganz noted that the current quality and accuracy of real-world data in the patient's EHR is very poor and not suitable for supporting a learning health 66 See https://www.cdc.gov/cancer/breast/triple-negative.htm (accessed December 12, 2023)
|
From page 56... ...
In 2019, the PROTEUS Consortium was established to help researchers and clinicians navigate the use of PROs in trials and clinical practice. PROTEUS provides a "roadmap" for incorporating PROs in clinical trials and, in 2023, PROTEUS released a guide synthesizing key information from existing resources for using PROs in clinical practice.68 Snyder said PROs "are the intersection of patient centeredness and evidence" and she advocated for the continued collection of PROs in clinical trials and patient care to establish real-world evidence and improve equitable access to high-quality care.
|
From page 57... ...
PROs in Clinical Practice • User's guide to implementing PRO assessment in clinical prac tice (ISOQOL, 2015) • Users' guide to integrating PROs in electronic health records (Snyder and Wu, 2017)
|
From page 58... ...
She noted that these issues persist and are, in some cases, worse. Developments since the 2013 report include new treatments and increasing use of precision medicine; more consolidation of oncology practices and other changes in how cancer care is delivered; increasing threats to oncology workforce well-being and practice sustainability; continued implementation of the ACA, with increased patient access to health insurance coverage; a heightened focus on equity in cancer care; increasing care needs in rural areas; and a growing range of issues regarding the use of EHRs in cancer care.
|
From page 59... ...
She highlighted comments from other speakers who discussed the opportunities afforded by digital innovations to improve cancer care, as well as the potential of improved collaboration within the cancer research and care communities to develop a learning health system. In closing comments, Ganz reiterated that engaged patients are a key component of a high-quality cancer care delivery system and that technology can help enable discussions with patients about their diagnosis, prognosis, and the range of evidence-based treatment options.
|
From page 60... ...
Oncology care teams are multigenerational, and individuals have different ways of approaching their work and different perspectives on what is important. Ganz suggested there are opportunities to work across generations in seeking solutions.
|
From page 61... ...
NEJM Catalyst Innovations in Care Delivery 3(4)
|
From page 62... ...
2018. Representation of minorities and women in oncology clinical trials: Review of the past 14 years.
|
From page 63... ...
Has the Oncology Care Model improved quality of oncology care? JCO Oncology Practice 19 (11 suppl)
|
From page 64... ...
2022. Update on enrollment of older adults onto National Cancer Institute National Clinical Trials Network Trials.
|
From page 65... ...
2019. Clinician perspectives on electronic health records, communication, and patient safety across diverse medical oncology practices.
|
From page 66... ...
Santabárbara, L Seymour; and the National Cancer Institute of Canada Clinical Trials Group.
|
From page 67... ...
2021. "When offered to participate": A systematic review and meta-analysis of patient agreement to participate in cancer clinical trials.
|
From page 68... ...
PREPUBLICATION COPY -- Uncorrected Proofs
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.