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Dr. Maria Velez, chair of the COG's Diversity and Health Disparities Committee is leading a movement to scientifically document the impact of social determinants of health and diversity at every level of pediatric cancer research and care. We connected with Dr. Velez to learn about the innovative progress committee members are making and what gives her great hope.
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Throughout her career, Maria C. Velez. M.D., a pediatric oncologist at Children’s Hospital New Orleans has met families who fear their child will receive subpar cancer care because of their finances or because they live in a rural community. She's worked with parents who aren't comfortable asking questions in English, so they don't ask them at all. And she knows all too well that kids from groups that have been historically marginalized have worse outcomes than White children. That's why she's on a mission to eliminate barriers and give every child the best possible care. One way she's doing that is through chairing the Diversity and Health Disparities Committee for the Children's Oncology Group (COG).
"The key to developing the most effective treatments begins with a strong partnership between lab research and patient families," she says. "Our committee is collaborating with oncologists across COG to develop research that is more inclusive of patient's life experience in hopes of improving outcomes for children everywhere."
We recently asked Dr. Velez about her work on the committee and about her team's biggest initiatives.
Q: What is the biggest goal for COG's Health and Disparities committee?
The Diversity and Health Disparities Committee’s main goal is to ensure that every child, regardless of race, ethnicity, language, socioeconomic status, age or gender has a fair chance to survive cancer.
To achieve this goal, our researchers study the relationship between social determinants of health (SDOH), which includes things like housing and financial stability or English fluency and how those factors impact the success of a child’s treatment and outcome.
We also work to ensure that children, adolescents and young adults (AYA) have access to the same high-quality treatment and supportive services regardless of where they receive oncological care. This might surprise some people, but AYA patients are considered an underserved group because they don’t always have access to the resources to support AYA patient-specific needs, like health insurance, fertility preservation specialists, and psychosocial support dedicated to helping these patients transition and navigate adult care. Disparities in the care of childhood cancer survivors have also been identified and are a research focus for many of our committee members.
Through our robust liaison program, we support other committees by collaborating to make sure studies are collecting and considering SDOH across COG trials in similar and equitable ways. Members of our committee are focusing their research on how things like access to food and reliable transportation could affect survival and outcome.
Q: What are some examples of how this committee is working to improve the patient family’s experience?
Many families find understanding medical language and learning about their child's condition to be difficult. This is especially true for families where English is not their preferred language. We believe better understanding and closing those communication gaps will have a game-changing impact.
When I first moved to New Orleans, I met a mom who was grateful that I could explain her child's care in Spanish. As I was explaining her child’s treatment, she said something that opened my eyes. She asked: "Is this the same medicine they offer to kids who speak English?" And I said, "Yes. Of course!" She said, "I just want to be sure I'm getting offered the same that a parent who speaks English will get offered." Right away, I realized how real these concerns are for families whose English is not their preferred language.
Language barriers can also impact practical aspects of care. For example, if a family receives Medicaid transportation support, but the transportation misses a pick-up, families need to know who to call – and who can answer their questions in Arabic, Vietnamese or countless other languages.
Our committee is analyzing the preferred language in which cancer care is explained to families by providers as well as through the written materials their care team gives them. Our committee members work with colleagues and parent advocates to help us identify where they would need support to receive the information in their preferred language making them comfortable understanding and speaking up when they have questions about the information provided.
When parents and patients can fully understand their care, it’s easier for them to get engaged and participate as members of the team. Hopefully, they have the tools to articulate symptoms and side effects we want to know about. They can also be the advocate for their child or themselves that we want them to be.
Q: How does this committee’s research improve pediatric cancer care at the bedside?
Nothing is more emotionally terrifying than your child having a serious illness. We need to have the trust of every parent, so we can learn everything we need to know about their child and give them the best possible care. But trust isn’t a given. We must work hard to earn parent and patient’s trust in us. So we need to study and define ways to improve our understanding of what reservations or beliefs people have about medicine.
Over the years, I’ve also seen how my colleagues can quickly earn the trust of patient families when they look or speak like them. I see these families be more comfortable asking questions, raising concerns and being vulnerable with their feelings with providers and patients who share many other similarities. This is often the case for every family of every race, ethnicity, or background. We know we need to create better pathways to pursue medicine for underrepresented minorities. And in doing so, we can improve trust and communication with our families at the bedside.
We recently asked Dr. Velez about her work on the committee and about her team's biggest initiatives.
Q: What is the biggest goal for COG's Health and Disparities committee?
The Diversity and Health Disparities Committee’s main goal is to ensure that every child, regardless of race, ethnicity, language, socioeconomic status, age or gender has a fair chance to survive cancer.
To achieve this goal, our researchers study the relationship between social determinants of health (SDOH), which includes things like housing and financial stability or English fluency and how those factors impact the success of a child’s treatment and outcome.
We also work to ensure that children, adolescents and young adults (AYA) have access to the same high-quality treatment and supportive services regardless of where they receive oncological care. This might surprise some people, but AYA patients are considered an underserved group because they don’t always have access to the resources to support AYA patient-specific needs, like health insurance, fertility preservation specialists, and psychosocial support dedicated to helping these patients transition and navigate adult care. Disparities in the care of childhood cancer survivors have also been identified and are a research focus for many of our committee members.
Through our robust liaison program, we support other committees by collaborating to make sure studies are collecting and considering SDOH across COG trials in similar and equitable ways. Members of our committee are focusing their research on how things like access to food and reliable transportation could affect survival and outcome.
Q: What are some examples of how this committee is working to improve the patient family’s experience?
Many families find understanding medical language and learning about their child's condition to be difficult. This is especially true for families where English is not their preferred language. We believe better understanding and closing those communication gaps will have a game-changing impact.
When I first moved to New Orleans, I met a mom who was grateful that I could explain her child's care in Spanish. As I was explaining her child’s treatment, she said something that opened my eyes. She asked: "Is this the same medicine they offer to kids who speak English?" And I said, "Yes. Of course!" She said, "I just want to be sure I'm getting offered the same that a parent who speaks English will get offered." Right away, I realized how real these concerns are for families whose English is not their preferred language.
Language barriers can also impact practical aspects of care. For example, if a family receives Medicaid transportation support, but the transportation misses a pick-up, families need to know who to call – and who can answer their questions in Arabic, Vietnamese or countless other languages.
Our committee is analyzing the preferred language in which cancer care is explained to families by providers as well as through the written materials their care team gives them. Our committee members work with colleagues and parent advocates to help us identify where they would need support to receive the information in their preferred language making them comfortable understanding and speaking up when they have questions about the information provided.
When parents and patients can fully understand their care, it’s easier for them to get engaged and participate as members of the team. Hopefully, they have the tools to articulate symptoms and side effects we want to know about. They can also be the advocate for their child or themselves that we want them to be.
Q: How does this committee’s research improve pediatric cancer care at the bedside?
Nothing is more emotionally terrifying than your child having a serious illness. We need to have the trust of every parent, so we can learn everything we need to know about their child and give them the best possible care. But trust isn’t a given. We must work hard to earn parent and patient’s trust in us. So we need to study and define ways to improve our understanding of what reservations or beliefs people have about medicine.
Over the years, I’ve also seen how my colleagues can quickly earn the trust of patient families when they look or speak like them. I see these families be more comfortable asking questions, raising concerns and being vulnerable with their feelings with providers and patients who share many other similarities. This is often the case for every family of every race, ethnicity, or background. We know we need to create better pathways to pursue medicine for underrepresented minorities. And in doing so, we can improve trust and communication with our families at the bedside.
Q: How can research into diversity and health disparities help personalize pediatric cancer treatments?
This might surprise people, but genetics research is hugely important in reducing health disparities. We’re at the very beginning of answering a lot of questions. We may be susceptible to different diseases or experience diseases differently based on our genetics and where we come from in the world.
We’ve built genetic and molecular testing that advises patients of their potential risks or predisposition to some cancers. Colleagues at COG have also developed molecular and genetic tests that help us offer targeted therapies specific to those genes. When possible, this helps us personalize treatments to each child’s unique tumor biology. Through the COG trials, these are available to every child.
This might surprise people, but genetics research is hugely important in reducing health disparities. We’re at the very beginning of answering a lot of questions. We may be susceptible to different diseases or experience diseases differently based on our genetics and where we come from in the world.
We’ve built genetic and molecular testing that advises patients of their potential risks or predisposition to some cancers. Colleagues at COG have also developed molecular and genetic tests that help us offer targeted therapies specific to those genes. When possible, this helps us personalize treatments to each child’s unique tumor biology. Through the COG trials, these are available to every child.
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Tell us more about the new Minority Young Investigator Award the Diversity and Health Disparities Committee launched with funding from the Children’s Cancer Research Fund.
A few years ago, my vice chair, Lena Winestone, M.D., MS, with UCSF Benioff Children’s Hospital, and I set out to build a program that supported young minority investigators in establishing their research careers. We are especially interested in supporting scientists who are focused on solving problems or identifying the needs of our minority and underserved patients. The Children’s Cancer Research Fund saw the value in this effort at every level. They’ve now funded two sets of awards and each investigator receives $50,000 for a two-year study. Now, we are moving forward one of COG’s biggest priorities – building a strong pipeline of underrepresented minority scientists and establishing new knowledge about how to best overcome some of the barriers to care that our minority and underserved patients may encounter. The four awardees include: The four awardees include: |
Children’s Cancer Research Fund is a national nonprofit dedicated to ending childhood cancer. The main focus of the Children’s Cancer Research Fund is to support the research of bright scientists across the country whose ideas can make the greatest impact for children fighting cancer. |
- Ekene Onwuka, M.D., MS, at Texas Children’s, studying the genetics of rhabdomyosarcoma solid tumors. He’s looking into the genetic traits of rhabdomyosarcoma solid tumor patients and how their ethnic or racial ancestry is connected to outcomes.
- Jenny Ruiz, M.D., MSCE, University of Pittsburgh School of Medicine is examining the variance in white blood cell counts for African-American populations. This group tends to have lower white blood cell counts, but some clinical trial criteria require a higher white blood cell count, which means some patients might not be eligible. In one of her recent publications, funded by this grant, she used clinicaltrials.gov registry and showed industry sponsored phase I pediatric cancer studies are more likely to require higher absolute neutrophil counts at enrollment compared to non-industry sponsored trials.
- John Ligon, M.D. at the University of Florida is examining clinical trial recruitment disparities and assessing different outcomes for minority patients treated on immunotherapy clinical trials.
- Joanna Robles, M.D. at Wake Forest University School of Medicine is looking into health literacy needs for clinical trial participants whose preferred language is not English. Her project will provide crucial data on how we can help families considering clinical trials feel confident in making their decisions.
Q: What are the biggest challenges the Diversity and Health Disparities Committee faces?
Many cancer researchers will have the same answer – funding. For research in diversity and health disparities, it’s even more scarce. Many of the large granting institutions are still mostly prioritizing new therapy development. This is very important, but it’s not the only piece of the cancer puzzle.
That’s why the donors who support the Children’s Oncology Group Foundation are essential. We can’t thank donors enough for seeing the value and the potential to improve outcomes for thousands of kids and to offer families the support they need from the moment their child is diagnosed through their survivorship care.
Q: What is the best part about being a pediatric oncologist?
Getting to know each child’s personality. Children and young adults are incredibly resilient, and even after many years, I still learn from them. Every patient teaches us something about hope and compassion or how to improve their care. Watching them grow up and knowing we’re part of making their future possible is incredibly rewarding. But we also hold close to us the legacy of the children who unfortunately don’t survive. They teach us about the power of human connections, and how to be present and patient.
The little ones and their sense of humor play a powerful role for us. They lift us up with their funny stories and creative questions. The way they use comedy to take on painful procedures and things that make them scared is something unique to pediatrics. There’s also no better motivator than hearing a child’s laughter or seeing their smile – and they give the best hugs.
Many cancer researchers will have the same answer – funding. For research in diversity and health disparities, it’s even more scarce. Many of the large granting institutions are still mostly prioritizing new therapy development. This is very important, but it’s not the only piece of the cancer puzzle.
That’s why the donors who support the Children’s Oncology Group Foundation are essential. We can’t thank donors enough for seeing the value and the potential to improve outcomes for thousands of kids and to offer families the support they need from the moment their child is diagnosed through their survivorship care.
Q: What is the best part about being a pediatric oncologist?
Getting to know each child’s personality. Children and young adults are incredibly resilient, and even after many years, I still learn from them. Every patient teaches us something about hope and compassion or how to improve their care. Watching them grow up and knowing we’re part of making their future possible is incredibly rewarding. But we also hold close to us the legacy of the children who unfortunately don’t survive. They teach us about the power of human connections, and how to be present and patient.
The little ones and their sense of humor play a powerful role for us. They lift us up with their funny stories and creative questions. The way they use comedy to take on painful procedures and things that make them scared is something unique to pediatrics. There’s also no better motivator than hearing a child’s laughter or seeing their smile – and they give the best hugs.