Equity, Diversity, and Inclusion in Cancer Care Is Not One Thing. It’s Everything.

Jan 04, 2022

ASCO unveils 5-year plan for mission pillars of research, education, and quality

By Aaron Tallent

Over the past few decades, incredible and lasting progress has occurred in cancer research, care, and prevention, as evidenced by a 31% decline in U.S. cancer mortality rates since 1991. 1 This progress, however, hasn’t been universally enjoyed by all individuals with cancer and a person’s race, gender, socioeconomic status, and geography often determine one’s chances of surviving cancer.

Black Americans, for example, have the highest death rate and shortest survival rate of any racial group in the United States. Eleven percent of Black Americans are uninsured and only 57% have private insurance, compared to 6% and 73% with white Americans, respectively. 2

Disparities in cancer care and outcomes are largely driven by persistent systemic issues, despite progress in civil rights and reductions in poverty, noted Sanford E. Jeames, DHA, co-chair of ASCO’s Health Equity and Outcomes Committee.

“Before we can really tackle inequities in cancer care, we need to face and acknowledge the impact historical and structural discrimination has had on the health care system in the United States,” Dr. Jeames said. “With a full appreciation and understanding of that reality, I’m hopeful that with all the work ASCO is advancing through the dedication and service of untold numbers of committed volunteers and members, we can make meaningful progress on behalf of all individuals with cancer.”

A Legacy of Commitment, A Future of Promise

ASCO began in 1964, when seven oncologists—six white men and one Black woman—came together with a shared purpose of forming a professional society that would harness the power of shared knowledge to improve the care of all patients with all types of cancer. One of those founders was Jane C. Wright, MD, a highly accomplished cancer researcher and patient advocate, who held a singular focus to save the lives of people with cancer and a deep-rooted belief that everyone deserved equal treatment. That commitment to equity and to addressing health disparities in cancer care has permeated ASCO since its inception.

Recognizing the need to impact the larger cancer care delivery system, ASCO began making formal recommendations and issuing statements to draw attention to and address specific areas of concern. In 2009, ASCO issued its first policy statement that provided recommendations on reducing disparities in cancer care.3 The Society has since developed and published guidance in several areas, including reducing disparities through the Affordable Care Act, charting the future of cancer health disparities research, improving diversity in clinical trial participation, among many others.4-6

“Today ASCO has the opportunity, ability, and will to build on its strong foundation in health disparities and make a greater impact,” said ASCO CEO Clifford A. Hudis, MD, FACP, FASCO. “I am confident that the steps we are taking now will accelerate lasting and meaningful change.”

The events of the past 2 years, including the COVID-19 pandemic and the murder of George Floyd, have further galvanized ASCO to integrate a focus on equity, diversity, and inclusion (EDI) into everything it does as an organization and to hold itself accountable for concrete progress towards its long-term vision for equity in cancer care.

“In 10 or 15 years, we don't want to look back and say, ‘We did the equity thing. We’re done.’ In 10 or 15 years, we want to really talk about the impact and continue to work to ensure equitable access to high-quality care,” said Sybil R. Green, JD, RPh, MHA, ASCO's Chief Diversity and Inclusion Officer.

ASCO’s Evolving Approach to Equity, Diversity, and Inclusion

ASCO’s work aims to address all of the important differences that can impact access to cancer care and outcomes, including age, gender, sexual orientation, and geography—both in the United States and internationally.

A first step was for ASCO to put its commitment in writing. In 2020, the Society added health equity to its mission statement, which is now: “Conquering cancer through research, education, and promotion of the highest quality, equitable patient care.”

“ASCO’s mission statement foundationally guides all of the Society’s efforts. The fact that we affirmatively added equity to our mission means that high-quality and equitable patient care are equally valued in everything we do,” said 2021-2022 ASCO president Everett E. Vokes, MD, FASCO. “Our mission statement also reflects that ASCO’s commitment to health equity is global. Today, most deaths due to cancer occur in low- and middle-income countries, where cancer rates are rising dramatically and disparities in access to care are greatest. We have the opportunity—and responsibility—to reduce this inequity.”

Another step for ASCO was to make Ms. Green the organization’s first Chief Diversity and Inclusion Officer to lead the Society’s EDI initiatives. For her, ASCO’s restructuring of its approach to health equity is akin to laying the foundation for a building.

“The only way to create a stable high-rise building is to build a strong foundation many feet below the surface. With health equity, we’re rebuilding our foundation in some respects. In other areas, we're breaking new ground and digging even deeper to ensure we reach even higher heights,” she said.

The beginning of this “digging” was a 2020 statement by the ASCO Health Equity Committee that redefined ASCO’s approach to equity.7 The statement affirmed ASCO’s commitment to move beyond identifying disparities to determining areas where the Society could make a difference and committing resources to those areas.

The next phase was the Board of Directors’ adoption of ASCO’s Equity, Diversity, and Inclusion Strategic Priorities, which were recently released as the “ASCO Equity, Diversity, and Inclusion Action Plan: A Legacy of Commitment, a Future of Promise for All Individuals with Cancer.”

“ASCO has clearly aligned its EDI goals within the mission pillars of research, education, and quality, and I think that is extremely important. If you embed it in the goals of the mission, then it becomes a part of the fabric of the Society,” said Lori J. Pierce, MD, FASTRO, FASCO, chair of ASCO’s Board of Directors.

The action plan describes a wide range of activities and initiatives that ASCO is undertaking; identifies where ASCO can have the greatest measurable impact in each of its research, education, and quality strategic pillars; and sets measures for the Society to hold itself accountable.

“The transformation that I'm seeing in ASCO within the past 12 to 24 months is the organizational embrace of the idea that equity is not a side project. Equity is an organizational value that needs to be infused across everything that we do,” said Katherine E. Reeder-Hayes, MD, MSc, MBA, a member of the ASCO EDI Strategic Plan Workgroup and past chair of ASCO’s Health Equity and Outcomes Committee. “To ensure this infusion, the action plan is organized around ASCO’s research, education, and quality mission pillars, which provide a comprehensive framework for organizing concrete steps ASCO will take to achieve true equity in cancer care and research.”

EDI Action Plan: Research

The inequities in cancer care begin with the underrepresentation of certain populations in cancer research. For example, recent analyses of cancer treatment trials found that only 4% to 6% of trial participants are Black and 3% to 6% are Hispanic, whereas they represent 15% and 13% of all patients with cancer, respectively.1,2

ASCO’s EDI Action Plan, under the research mission pillar, seeks to ensure that clinical trials more accurately represent the population of patients with cancer and are available as a treatment option for underrepresented populations. One critical area of focus is broadening clinical trial eligibility. Overly restrictive eligibility criteria can limit the participation of patients and impede a full understanding of how a therapy performs in diverse patient populations.

In 2016, ASCO and Friends of Cancer Research began a joint project to develop and advance strategies to broaden trial eligibility criteria through research statements and recommendations. Under the plan, ASCO will continue its work on this effort by raising awareness and assessing the success of the implementation of its recommendations.

“If clinical trials don’t represent all patients with cancer, the state of science suffers and patients with life-threatening conditions may miss out on the best—perhaps only—treatment option for their condition,” said Dr. Pierce.

A collaboration between ASCO and the Association of Community Cancer Centers (ACCC) addresses another barrier to clinical trial participation: clinicians are not routinely offering trials to eligible patients. A systematic review and meta-analysis, published last year, of 35 trials over a 20-year period found that more than half of all patients with cancer who are offered a clinical trial do participate, regardless of race. In fact, 58.4% of Black patients participated when asked, compared to 55.1% of white patients.8

According to Dr. Jeames, who is also co-chair of the Patient Partners Advisory Group for the ASCO-ACCC collaboration, this initiative will help cancer research sites evaluate structural and procedural factors that may impact patient screening and participation. “We believe the use of a site assessment tool and implicit bias training can foster greater participation by underrepresented populations in cancer treatment trials so that our research more fully reflects the diversity of people living with cancer,” he said.

The initiative also involves a curriculum-based implicit bias training, combined with interventional exercises for enrolling patients and the opportunity to meet with other participating sites for an interactive discussion.

A pilot project to test the feasibility and utility of the research site assessment tool and the implicit bias training program is currently underway. For Dr. Pierce, Dr. Jeames, and others involved in the ASCO-ACCC collaboration, the level of interest was gratifying.

“We thought that maybe if we were lucky, we would have around 40 practices [in the pilot]. We ended up getting 75 and included them all because we were delighted to have that degree of receptivity. It also allowed us to have a lot of variations with size and location,” said Dr. Pierce.

The practices have now completed the pilot program and the next step is for ASCO and ACCC to analyze the results of the test and alter the site assessment tool and training program based on results. The long-term goal is for both the tool and training program to be shared with the larger oncology community and be widely used in clinical trial sites.

The Society is also committing itself to design all ASCO-sponsored research with an eye towards EDI. For example, ASCO’s Targeted Agent and Profiling Utilization Registry (TAPUR) Study team is preparing a manuscript on its work to prioritize recruitment of underrepresented populations in the trial and discuss future directions with plans for publication this year. TAPUR is designed to include a broader patient population, as it enrolls patients who have any advanced solid tumor, multiple myeloma, or B cell non-Hodgkin lymphoma who have exhausted all standard treatment options.

Another initiative underway with ASCO’s Research Committee is the Clinical Trials Access and Participation (CTAAP) Task Force, which is examining barriers to trials in the three traditional models (site-based, offsite referral, and hybrid). The CTAAP will hold a stakeholder meeting in early 2022 to develop recommendations that address access and participation barriers for clinical practices across clinical settings.

Research figures just as prominently in the Society’s efforts to address global health disparities. Improving health equity in resource-limited countries depends on research into the causes of disparities and discovering solutions that can have an impact and improve outcomes. ASCO and Conquer Cancer, the ASCO Foundation, are major supporters of global oncology research, training investigators around the world in the conduct of clinical cancer research, funding innovative global oncology research through grants like the International Innovation Grants and Global Oncology Young Investigator Awards, and disseminating global oncology research findings through the Society’s journal JCO Global Oncology.

EDI Action Plan: Education

The second pillar of ASCO’s plan focuses on education and aims to create a more diverse oncology workforce that better reflects the diversity of the population and is equipped to care for every patient.

As with the clinical trials, the diversity of the US oncology workforce does not align with the country’s demographics. The U.S. population is 13% Black and 18% Hispanic/Latinx, but the oncology workforce is just 3% Black and 4.7% Hispanic/Latinx. And while women make up about half of the U.S. population, they comprise just 33.1% of the U.S. oncology workforce.9,10

“When you look at these numbers, it is clear that we need to be fostering a more diverse oncology workforce. If physicians have walked in the shoes of the patients they are seeing, that can help lead to more equitable care,” said Dr. Vokes.

In 2017, ASCO issued a roadmap to guide future efforts for increasing racial and ethnic diversity in the oncology workforce.11 The EDI Action Plan builds on that roadmap and details the Society’s plans for creating and expanding its professional development programs to support medical students through early-career oncologists. Through these programs, ASCO hopes to encourage students to consider and select oncology as a career path, and then have the resources needed to stay in their field.

“Our education and workforce programs are structured in a way to support from the time that someone is a medical student all the way through their membership and career. We don’t just want to have an impact in one place,” said Ms. Green.

ASCO has several programs that stretch across the pipeline of the oncology workforce, and each is aimed at building a diverse, equitable, and inclusive oncology workforce. For example, the Medical Student Rotation Award provides financial support for US medical students from populations underrepresented in medicine and who are interested in oncology as a career. Awardees participate in a minimum 4-week clinical or clinical research rotation and attend the ASCO Annual Meeting, where they have an opportunity to hear the latest science and meet leaders in oncology. ASCO also offers the Diversity Mentoring Program, which is a virtual mentoring program designed to encourage US-based medical students, residents, and fellows who are underrepresented in medicine to pursue rewarding careers in oncology. The program seeks to educate physicians-in-training by fostering relationships with mentors who can provide career and educational guidance and serve as a professional resource.

As Dr. Pierce noted, many students like her are first-generation college graduates who are coming into medical school where oncology is not one of the core clinical rotations. It is important that they are reached early and throughout their medical education.

To do this, last year ASCO launched the Oncology Summer Internship (OSI) pilot, a 4-week internship designed to help second-year medical students from populations underrepresented in medicine explore cancer care and oncology as a career.

“This program gives students an opportunity to see what excites them, while showing them the breadth of careers in oncology and how much of a difference they can make,” said Dr. Pierce.

The OSI offers virtual education forums, mentoring and physician shadowing, and networking opportunities. In 2021, 29 medical students participated in internships at five medical schools: The Ohio State University, University of Arizona Health Sciences College of Medicine – Tucson, University of California, San Francisco, University of Pittsburgh, and University of Rochester. ASCO has plans to expand the program in 2022.

The Society also will continue to build and support the oncology workforce internationally, especially in resource-limited settings, where a limited workforce is one of the major causes of health disparities. Working with dozens of oncology societies around the world, ASCO is hosting training courses in multidisciplinary cancer care and palliative care that are specially adapted to the countries where the work is being done. The Society’s International Cancer Corps program takes this engagement a step further, connecting ASCO with hospitals in Honduras, India, Bhutan, Vietnam, Uganda, and Malaysia to provide oncology training and other ASCO resources.

The plan also commits ASCO to focus on diversifying its own leadership and volunteer base so that it is representative of its membership and the cancer population. ASCO is putting a greater emphasis on involving members from low- and middle-income countries in ASCO’s professional development and leadership development programs. Under the direction of its Asia Pacific Regional Council, in 2021 the Society launched its first Leadership Development Program for Asia Pacific, with an initial class of members from 12 countries who will participate in a 12-month program adapted from ASCO’s well-established Leadership Development Program.

ASCO is not just working towards creating a more diverse oncology workforce, but also ensuring that every member of the oncology care team is well-equipped to care for each and every patient with cancer. To meet this goal, the Society has created educational courses and materials on topics such as cultural literacy and social determinants of health, to help oncology care providers become better versed in opportunities to address EDI. The Society also plans to develop additional educational resources and tools related to equity.

EDI Action Plan: Quality

Inequities in the distribution of health care resources and inadequate infrastructure affect the availability and quality of oncology treatments.

“Disparities in cancer care is a quality problem. If we have any situation in which we’re delivering better cancer care to some people than others, then we have both a quality problem and an equity problem,” said Dr. Reeder-Hayes.

The third pillar of ASCO’s EDI Action Plan is to reduce barriers to access to care and give practices the support to advocate for and acquire needed resources to deliver high-quality, equitable care. ASCO has a longstanding commitment to quality, both in the United States and globally, starting with the publication of its first clinical practice guideline in the 1990s. The Society’s Quality Oncology Practice Initiative (QOPI) allows outpatient oncology practices to self-examine and improve their quality of care and is available in the United States, Argentina, Australia, Brazil, all countries in the European Union, India, Malaysia, Mexico, New Zealand, Pakistan, Philippines, Saudi Arabia, and the United Kingdom. ASCO is piloting a QOPI program adapted to low-resource settings in Uganda and Honduras, with plans to expand the pilot in 2022. ASCO plans to expand access to QOPI, the QOPI Certification Program, and the Quality Training Program internationally to support practices through quality measurement and improvement.

ASCO is also currently working to develop a sound and reliable method that will allow practices to assess their delivery of equitable cancer care. Practices will be able to identify needed improvements and implement quality improvement initiatives and other interventions. The Society aims to pilot the scoring system in the next few years and make it available to the wider oncology community after that.

“We offer people tools to measure a lot of aspects of cancer care quality with our QOPI program and with other tools, but we have not until now offered people a way to check themselves on whether they have the structures and processes in place to deliver equitable care,” said Dr. Reeder-Hayes.

A second component of the plan is to provide resources to oncology providers to help them address the social needs of their patients. A recent ASCO survey of its members on equity found that members want to address equity but need to be empowered with practical tools to do so.

ASCO is conducting additional qualitative and quantitative research to identify the needs of providers in caring for underserved patients. A preliminary analysis shows that the majority of oncology practices are spending 25% to 50% of their time caring for underserved patients, with many reporting that team-based approaches to care delivery are key, with all staff working to the top of their license. This effort will likely lead to the development of new tools that are specifically designed to address this issue.

As part of its ongoing work to address inequity globally, ASCO provides resource-stratified guidelines to support cancer care providers in resource-limited settings. These guidelines, which are also relevant to resource-limited settings in the US, provide a flexible framework to help oncologists identify the best means of diagnosing and treating patients, depending on the resources available.

“We often find that while rural America, urban areas with high poverty rates, and [low-income] countries are all different settings, the challenges patients face there are very similar,” said Dr. Vokes. “I’m particularly excited about ASCO broadening its impact throughout the world through our International Affairs Committee, our Regional Councils, and our members in more than 100 countries.”

ASCO is also conducting a qualitative analysis to reduce disparities among sexual and gender minority (SGM) patients in oncology. The lack of sexual orientation and gender identity (SOGI) data collection is a barrier to including SGM patients in oncology research, leading to disparities. Results from a survey presented at the 2021 ASCO Annual Meeting showed that barriers in collecting SOGI data range from culture to workflow challenges to electronic health record issues.12 The analysis will capture key components of the leadership and infrastructure support needed to capture and appropriately use SOGI data in cancer care and research.

Advocating for Equity, Diversity, and Inclusion

The Association for Clinical Oncology, ASCO’s affiliated organization, works to ensure all individuals with cancer have access to high-quality, equitable, and affordable care. Through the Association, ASCO is working to advance policy and legislation at the federal and state level to improve equity in cancer research and care and is giving members an opportunity to add their voices to this effort.

In 2020, ASCO successfully advocated for the passage of the CLINICAL TREATMENT Act. This bipartisan bill requires Medicaid to cover routine care costs for patients with life-threatening conditions who are enrolled in clinical trials. The bill was signed into law in early 2021.

“For anyone who thinks advocacy doesn't work, I tell them the story of the CLINICAL TREATMENT Act. This needed to be changed, and we changed it through advocacy,” said Dr. Pierce.

As part of its work to improve health equity, the Association is currently advocating to expand Medicaid, expand access to tobacco cessation, and improve uptake of the human papillomavirus (HPV) vaccine. It is also pursuing the passage of legislation to ensure that flexibilities enacted during the COVID-19 pandemic remain in place after the public health emergency ends so that patients will have the options to see providers virtually, without needing to take as much time off work or pay for travel and childcare.

“With health care costs rising and the way we deliver care being at an inflection point, it is critical that oncologists have a seat at the table where policy is being developed so that we can ensure our equity-focused priorities are also priorities of state and federal lawmakers,” said Dr. Vokes.

Over the coming months and years, ASCO will continue to focus on opportunities to move the needle on equity, diversity, and inclusion, and will look for avenues where it can have the biggest impact.

“As oncologists, it is our obligation to identify and overcome any and all barriers to high quality cancer care—not just for our patients, but for all people with cancer,” said Dr. Hudis. “And we will not rest until each and every patient has a chance at the best possible outcome for their disease.”

Take Action: Diversify Clinical Trial Participation

Fully addressing underrepresentation in cancer research will require the work of all sites across the country. However, there are some immediate steps that you can take within your practice.

The first is to recognize that implicit bias does exist; this may need to be discussed among your staff and factored into the guidance you give in discussing clinical trials with patients. Dealing with implicit bias directly does not mean admitting to failure and ignoring it only exacerbates the problem.

“When people tell me that they're colorblind, I say, ‘Oh my goodness. It means they don't see me for who I am.’ We need people to not be colorblind but be real with people, and the same thing goes for cancer care,” said Dr. Jeames.

Another step is to discuss clinical trials with every patient. Educate them about the process, but also take the time to listen to their questions and concerns, as well as the challenges, barriers, and limitations they may face with participating. One way to potentially make more time to do this is by triaging the discussion to other members of the oncology care team.

“Patient navigators, nurse practitioners, physicians’ assistants, and pharmacists are also able to talk with patients collectively and take the time to give them the information about clinical trials,” said Dr. Pierce.

Take Action: Increase Workforce Diversity

It takes nearly a decade of higher education to create an oncologist, but there are a few pragmatic steps you can take to diversify your own workforce. You can start by determining if your practice workforce is reflective of your patient population.

For all hires, including front office staff, nurse practitioners, patient navigators, and oncologists, it is important to be deliberate about making the job posting as broad as possible. Specific, targeted postings can often lead to targeted hires in which physicians from backgrounds underrepresented in medicine may not fit the criteria.

Practices should also look for opportunities to mentor oncologists in the early stages of their career.

“You need to encourage fellows [from underrepresented populations] to rotate through your practice so that they get a sense of the practice, the patients that they will care for, and the comfort level in that practice,” said Dr. Pierce.

Take Action: Improve Equity and Quality in Your Practice

If you’re an oncologist, chances are that quality improvement is a continuous part of your care delivery. While self-assessment tools are not readily available in health equity like they are in quality, there are some steps you can take in this area. The first is to look inward.

“Walk into your practice and start to ask yourself which patients have the easiest time navigating your system, your office environment, your system for getting help outside of office hours, and even your parking lot. Then I would ask who has the most difficulty,” said Dr. Reeder-Hayes.

Once you complete those steps, it may be worth sitting down with patients to discuss the challenges they are facing. That conversation could be extended to leaders in the community to get a fuller picture of their day-to-day life. The bottom line is that your focus should be on improving the patient experience.

“The quality of the patient’s experience in the oncology setting is vital to the patient's outcome,” said Dr. Jeames.

Take Action: Become an Advocate

This is the easiest step that you can take. The Association for Clinical Oncology’s ACT Network allows you to follow legislative developments and contact your federal and state lawmakers from your computer. Sign up at asco.org/ACTNetwork.

“Our stories are very powerful stories because they're real, and that's what advocacy is all about. It’s what changes minds and that is how we create change,” said Dr. Pierce.

Take Action: Additional Resources

If you are looking to take steps towards equity, diversity, and inclusion within your practice or at the societal level, ASCO offers a wide range of resources.

  • Visit asco.org/equity for all of ASCO’s resources on equity, diversity, and inclusion.
  • Volunteer as a mentor at asco.org/career-development/mentorship.
  • Find resources for patients on Cancer.Net, ASCO’s patient information website. We have materials to address financial toxicity, insurance access, and more.
  • Visit ASCO Education (education.asco.org) for courses and materials to help you increase your understanding and practice of social determinants of health, cultural literacy, and other EDI concepts.
  • Share your expertise by telling us what else ASCO can to do achieve our vision of high-quality, equitable cancer care for every individual with cancer. Contact us at equity@asco.org.

Conquer Cancer Support for Equity, Diversity, and Inclusion

Conquer Cancer, the ASCO Foundation, provides funding to support ASCO’s EDI work, including efforts to diversify the oncology workforce and support oncologists and trainees from underrepresented populations in medicine; increase participation of diverse populations in clinical trials; provide research grants in diversity, inclusion, and health disparities; and provide training to address gaps in health disparities and inclusion. Conquer Cancer is also supporting a comprehensive health equity awareness campaign that will chart the course for improved care for all. Learn more at CONQUER.ORG.


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