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  • Breast Cancer Is a Complex Journey

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    NIMHD intramural researcher, Dr. Faustine Williams wants you to know that early diagnosis and treatment are key to improving breast cancer outcomes.

    By Faustine Williams Ph.D., M.P.H., M.S.
    Stadtman Tenure-Track Investigator and NIH Distinguished Scholar
    Health Disparities & Geospatial Transdisciplinary Research Program
    Division of Intramural Research
    National Institute on Minority Health and Health Disparities

    Although we have seen substantial progress over the last 30 years in breast cancer incidence and outcomes, geographical and racial/ethnic disparities across the cancer care continuum persist.1, 2 As shown in the NIMHD research framework, the factors contributing to these disparities are complex, numerous, and interrelated sets of individual, interpersonal, community, and societal determinants.3 However, early breast cancer detection or diagnosis and treatment initiation can lead to better outcomes. For example, the 5-year relative survival rate for localized-stage disease that has not spread to other sites/organs is 99.0%.4

    Despite the advances in medicine and technology, cancer is still the word no one wants to hear. Years ago, when I interviewed breast cancer survivors about their experiences, they described it as a family experience because they could not have gone through it without the support from family and friends that helped them cope.5 The journey from diagnosis and treatment to survivorship does not just touch the affected individual, but family, friends, and loved ones as well. I thought I understood their stories, but I was wrong until I became the de facto caregiver to my friend/sister Yaa.

    In the summer of 2019, Yaa started complaining of weight gain. Well, we all told her to shut up, saying, “There is nothing on you!” She would always smile with her response. “I am serious; I am gaining weight, but all the weight is in my breasts.” Well, we responded, “Yaa, a little weight won’t kill you!”

    In September she went for her annual health examination and her mammogram results came back negative. By November, her bra cup size went up from 30B to 34C despite her being physically active and eating well. By March 2020, Yaa was wearing bra size 36G! She was unable to go for her regular evening run and was in constant pain.

    After numerous complaints, she was referred to a medical oncology/breast cancer specialist in May. She was under observation initially and was advised to get a good sports bra! She tried her best to help the team of providers understand that she was in pain, that something was wrong other than just physiological changes as a result of menopause, but the harder she tried the more everyone, including me, laughed or did not take her seriously. “Every woman’s body is different, but is it physiologically possible to gain weight that way?” she would always ask jokingly.

    Finally in August, a diagnostic mammogram was ordered. Initially, the result was inconclusive but later confirmed as negative. She requested a second opinion and in November, Yaa’s desire was granted. One thing Yaa kept saying was, “This is my body; there is something wrong, but no one is listening.” This new doctor was different. When Yaa walked in the first time, she gave my friend a sense of hope and comfort before her diagnosis was even confirmed. She listened and asked questions about Yaa’s background, family, education, work, hobby, and interests. After a physical examination of her breasts, the doctor felt that there was something wrong. At last Yaa finally felt someone was listening to her!

    Next, a biopsy was ordered which confirmed tumors in both breasts; surgery was ordered. The road to recovery has been tough for Yaa, but she is taking it day by day. She said she could not have gone through it without the support system available to her. But the question I keep asking myself is, did I contribute to my friend feeling crazy by telling her to shut up? What could I have done differently to make this journey less stressful and painful for my friend?

    Yaa’s experience brought to mind a study we conducted in St. Louis, Missouri. In 2014, a white paper released by the Susan G. Komen for the Cure St. Louis affiliate and Washington University found that more than 50% of African American women diagnosed with breast cancer in St. Louis never initiate treatment; others start later than recommended.6 We approached the problem from a systems science perspective using community-based system dynamics and group model building (GMB) with 34 community stakeholders, including 28 breast cancer survivors and family members, and 6 patient care navigators and social workers. Using various scripted activities, we created a very rich, dynamic, and complex causal loop diagram (CLD)/map describing factors contributing to breast cancer treatment delay among African American women in St. Louis.7 Then came the surprise.

    We did an activity called the “dot exercise” to identify factors and areas for intervention. Participants were asked to nominate elements in the diagram for which they would most likely see a change or intervention to improve breast cancer diagnosis and treatment outcomes in St. Louis. Each participant was given 4 “sticky dots” to place next to the variables on the CLD/map that were most important to them in terms of addressing the disparity. I expected “access to care” to be popular, but “fear” was most often selected. When the women were asked why addressing fear would help, they explained that could reduce unnecessary anxiety, since most of the people they knew who had had the disease had died. Overall, making the patient’s voice the centerpiece of breast cancer treatment delivery is critical to alleviating fear and reducing complex issues like treatment delay and disparities. The women also formed a support group called Urban Warriors Against Breast Cancer, working with navigators to reduce fear associated with breast cancer in the community. The group believes sharing their stories with newly diagnosed women offers them hope, support, courage, and strength, as well as a shared voice, so they do not face their journey alone.

    As we observe Breast Cancer Awareness Month, each of us should pause and ask, “What can I do differently from now on?” My friend Yaa was lucky, but others may not be as lucky as she was to live and to tell their story. Let us all aspire to change that today—to resolve to be quick to listen and slow to dismiss a friend or a question. There are many Yaas out there who are crying for help, but no one is listening. Let my friend’s story and my story be a lesson for all of us. Because…. even though the journey is complex, listening to the patients, giving them a voice and support makes it easy. That cry may be from a family member, neighbor, friend, colleague at work, the homeless person you pass daily, or the one person who gets on your nerves. Whoever it may be, when you hear it, do not ignore the cry; please act. Together we can fight against breast cancer!

    References

    1. Poulson, M.R., Beaulieu-Jones, B.R, et al. Residential Racial Segregation and Disparities in Breast Cancer Presentation, Treatment, and Survival. Ann Surg. Jan 1 2021;273(1):3-9. doi:10.1097/sla.0000000000004451
    2. Zahnd, W.E., Murphy, C., Knoll, M., et al. The Intersection of Rural Residence and Minority Race/Ethnicity in Cancer Disparities in the United States. International journal of environmental research and public health. Feb 3 2021;18(4)doi:10.3390/ijerph18041384
    3. Alvidrez, J., Castille, D., Laude-Sharp, M., Rosario, A., Tabor, D., The National Institute on Minority Health and Health Disparities Research Framework. American Journal of Public Health. 2019;109(S1):S16-S20.
    4. National Cancer Institute (NCI) S, Epidemiology, and End Results Program (SEER). Survival by stage. September 21, 2021. Accessed September 21, 2021. https://seer.cancer.gov/statfacts/html/breast.html
    5. Williams, F, Jeanetta, S.C. Lived experiences of breast cancer survivors after diagnosis, treatment and beyond: qualitative study. Health Expect. Jun 2016;19(3):631-42. doi:10.1111/hex.12372
    6. Project SLK. Addressing the African American and white breast cancer mortality disparities in St. Louis. 2014.
    7. Williams, F., Colditz, G.A., Hovmand, P., Gehlert, S., Combining Community-Engaged Research with Group Model Building to Address Racial Disparities in Breast Cancer Mortality and Treatment. J Health Dispar Res Pract. Spring 2018;11(1):160-178.

  • Storytelling Through Narrative Medicine: Measuring the Lived-Experiences of Black Women’s Reproductive Health

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    By Shameka Poetry Thomas, Ph.D.
    Postdoctoral Fellow
    NIH Intramural Research Program
    Health Disparities Unit
    Social and Behavioral Research Branch
    National Human Genome Research Institute

    My grandmother was a traditional healer and a medicine-woman in Georgia’s rural South. Although I grew up in Miami’s Opa-Locka (a small urban neighborhood tucked between Miami-Gardens and the cusp of Hialeah / Little Havana), I spent most summers near middle Georgia’s farmland, listening to my grandmother. I observed how grandmother, who did not have a Ph.D., gathered Black women in circles. She described the process of listening to Black women’s pregnancies, births, and wellness experiences as “chitchatting and holding space.”

    Learning how to ‘hold space’ is what draws me to narrative medicine. My first dose of learning how to conduct narrative medicine, I suppose, came from my grandmother. This methodology (before I knew it was such) was simply understood as the process of sitting in kitchens and beauty salons in the South—just listening. During childhood, I was merely curious about how Black women described their pregnancies, births, and reproductive health—from their side of the story. Thus, when it came to reproductive health, my grandmother taught me a powerful tool: how to “hold space” for people’s narratives.

    What is narrative medicine and holding space?
    As an early-career scientific investigator and medical sociologist, my prior work focused on holding space for the lived-experience of Black women’s pregnancy and birth at the clinical encounter via narrative medicine. Holding space, the keystone of my approach to narrative medicine, is defined as the ability to center the lived-experience via the practice of compassion and stillness, without blame, shame, or judgement. Narrative medicine1, thus, focuses on the experiential worlds of patients and operates from the basic principle that patients are individuals, rather than cases or variables. Patients, in this sense, can 1) interpret their own health (and illness) experiences; 2) define their own approaches of wellness, 3) communicate their perceptions of treatment, and 4) evaluate their own perspectives of outcomes inside and outside of clinical encounters. Researchers who employ narrative medicine aim to resurrect the stories of patients who have been marginalized by centering the lived-experience as legitimate data and findings.

    Using narrative medicine to investigate sickle cell disease in Black women’s pregnancy
    My current research, as a postdoctoral fellow in the National Human Genome Research Institute’s intramural research program (and a program contributor to NIMHD’s Centers of Excellence on Environmental Health Disparities Research), focuses on two aspects: 1) utilizing narrative medicine to examine the reproductive health experiences among Black women with genetic disorders, such as sickle cell disease (SCD); and 2) integrating social scientific frameworks across clinical approaches to contextualize the ethical, legal, and social implications of non-invasive prenatal testing (NIPT) among Black women with and without genetic conditions. My goal is thus to contextualize and measure how implicit and explicit racial bias manifests at the clinical encounter using narrative medicine approaches, concentrating on the lived-experiences of Black women’s health in the U.S.

    Why is narrative medicine critical for investigating Black women’s reproductive health?
    Adverse pregnancy and birthing outcomes among Black women have been well documented3 however, biomedical research has not explained why maternal mortality among Black women has steadily increased. In the U.S., for example, maternal mortality among Black women is 243% higher than in White women, and despite advances in reproductive health care4, detrimental birthing outcomes among Black women persist. Since Black women are three to four times more likely to die from preventable prenatal complications disproportionate to White women in the U.S.3,4, understanding the narrative behind the numbers2 is critical.

    Reproductive health disparities has been correlated with lack of access to quality health care services, racial discrimination, implicit and explicit bias at clinical encounters, and residential segregation3,4,5. Black women’s bodies have also been historically and ongoingly stigmatized, stereotyped, and objectified across medical institutions. Developments in reproductive healthcare, furthermore, benefited historically from the commodification of Black women’s bodies5 during the enslavement era.

    Black women’s reproductive health experiences are ultimately impacted by structural racism through racial discrimination. Although racial discrimination in the U.S. has demonstrably changed over time, it is still consequential. Implicit bias and unconscious racism, for example, are social products of structural racism that show how the complexities of racism operate during clinical encounters.

    Seeking to understand Black women’s perceptions of reproductive health as it relates to sickle cell disease, in turn, can help us to identify potential areas for intervention and improvements in health care for historically vulnerable populations. My research agenda integrates sociological frameworks with public health and clinical practices to center Black women’s reproductive health experiences in genetic technology and prenatal care.

    Synergizing the lived experience by integrating social science
    Now more than ever, it is important to integrate social scientific frameworks in biomedical research. I have identified four motivations for this integration, which we all should consider:

    1. We can see from the COVID-19 pandemic, the lived experience of race and racism is real. Therefore,, lived-experiences among both patients and physicians are also real because they belong to the ever-changing social stock of knowledge.
    2. The social stock of knowledge influences how individuals internalize, navigate, negotiate, and process the clinical encounter in making decisions.
    3. Narrative medicine challenges researchers to examine how patient perceptions are personally or collectively constituted, rather than merely appealing to the empirically based, objectified features of social life.
    4. Everyday lived-experiences, therefore, are impacted by top-down processes that are, in turn, shaped by historical structures, that continue to shape patient perspectives at the micro-level.

    Social scientific research, particularly qualitative methods, challenges us to grapple with reality at the micro level, and how lived-experience is perpetually shaped by the macro-level. Narrative medicine’s goal is to illustrate how a phenomenon appears before, during, and after the clinical encounter. Acknowledging and valuing the synergy of these integrations, in my perspective, is a step toward alleviating health disparities. By confronting what it means to eradicate the root of the structural problems, we have an opportunity to increase health equity that truly pushes our bold predictions to the forefront.

    Without the synergy of social science methods in biomedical research, we will continue to neglect the everyday experiences of many minority populations, regardless of scientific innovation. Equitable scientific innovation must consider how the social experience impacts health care outcomes. To do this, we need social scientists, clinical and basic researchers across disciplines to work in transdisciplinary teams, combining their strengths, using their methodologies to establish interventions to reduce and end health disparities. If not, we will only continue to perpetuate gaps in health outcomes. Ultimately, narrative medicine shows me how to hold space to reduce maternal mortality and improve health, by listening to the narratives of patients.

    Narrative medicine, a methodology that I hope to continue to bring to my research as a medical sociologist, is our opportunity in the field. It is in the forefront because it encourages us to value the synergy of trusting and listening. Ultimately, beyond the canon of biomedical knowledge, as well as my own advanced training as a Ph.D., I reflect on my first lessons of holding space. My grandmother comes to mind, as she may not have been a scientific researcher or clinician, but she taught me there is something to be said about the ability to simply hold space for the human story.

    References

    1. Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press: NY.
    2. Thomas, Shameka Poetry. 2021. “Street-Race in Reproductive Health: A Qualitative Study on the Pregnancy and Birthing Experiences among Black and Afro-Latina Women.” Journal of Maternal and Child Health. DOI: 10.1007/s10995-021-03188-2
    3. Adams, Crystal, and Shameka Poetry Thomas. 2018. “Alternative Prenatal Care Interventions to Alleviate Black / White Maternal and Infant Health Disparities.” Sociology Compass. https://doi.org/10.1111/soc4.12549
    4. MacDorman MF, Thoma M, Declercq E, and Howell EA. Racial and ethnic disparities in maternal mortality in the United States using enhanced vital records, 2016-2017. American Journal of Public Health DOI: 10.2105/AJPH.2021.306375 (2021)
    5. Roberts, Dorothy. 1997. Killing the Black Body. Routledge Press: NY.


  • All Health is Local: Measuring the Burden of Disease by U.S. County, Race/Ethnicity, and Socioeconomic Status

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    Ali H. Mokdad, Ph.D.
    Chief Strategy Officer, Population Health
    Professor, Health Metrics Sciences
    Institute for Health Metrics and Evaluation
    University of Washington, Seattle

    Despite greater public awareness about the social determinants of health, health inequities in the United States remain severe. Reducing disparities in health outcomes are a persistent challenge for policymakers, public health officials, and medical professionals. Due in part to these gaps, the U.S. underperforms against other industrialized countries in key health metrics, such as overall and healthy life expectancy. The reasons that the U.S. lags behind its peers are manifold. Most importantly, however, are the health discrepancies by geographic location, race/ethnicity, and socioeconomic status (SES). Understanding and reducing disparities among those most affected must be of central interest to policymakers to ensure that every person in the U.S. can lead a healthy life. A dearth of sufficient evidence on local health patterns produced from high-quality scientific research weakens our ability to understand the problem and design interventions. A particularly pressing need is for comprehensive and comparable examination of health outcomes for individuals in the U.S. by race/ethnicity and SES at the local level.

    Measuring the burden of disease at the local level in the U.S. is a tremendous undertaking with significant analytical and structural problems. A principal challenge is developing the linkages of health outcomes with location, SES, and race/ethnicity identifiers. Additionally, geographic boundaries are not stable; they shift over time as municipalities are incorporated or new counties are formed. Race/ethnicity categories used for data collection are likewise not consistent across time and location and can vary by data source. It is also common for discrepancies to exist between self-reported race/ethnicity and race/ethnicity as recorded on death certificates. There is also a need for the resources and technical capacity to conduct such work. The computational and analytical infrastructure needed to effectively incorporate all data into intensive computational approaches is massive.

    The Institute for Health Metrics and Evaluation (IHME) at the University of Washington is the lead organization for the Global Burden of Disease (GBD) Study. GBD estimates incidence, prevalence, mortality, years of life lost (YLLs), years lived with disability (YLDs), and disability-adjusted life-years (DALYs) due to diseases and injuries for 204 countries and territories. The GBD results are presented in the context of the Socio-Demographic Index (SDI), a composite indicator of income per capita, years of schooling, and fertility rate in women younger than 25 years.

    IHME has undertaken a variety of analyses within the U.S. at the subnational level aimed at improving the quantification of health disparities. These studies shed light on U.S. health disparities and their relative role in U.S. health system performance. IHME documented that many U.S. counties stagnated in their life expectancy trends,1 and in some cases, even declined. Health disparities at the county level are also significant. In Seattle and King County, for example, men face a staggering life expectancy discrepancy of 18 years.2

    The project to produce disease estimates at the U.S. county level by race/ethnicity and SES continues to evolve. IHME is now collaborating with NIMHD and the U.S. Burden of Health Disparities Working Group to extend use of the full GBD analytic framework from the national and state level to produce estimates for all 3,142 U.S. counties. Disaggregating results by race/ethnicity and SES is a cornerstone of the project. This joint effort aims to improve access to health data resources, bolster analytic approaches, and to deliver user-friendly estimates to the wider health policy community.

    For maximum value and impact, the quantification of health and health loss at the county level must be translated into policy. At IHME, a fledgling area of research uses GBD metrics to inform and evaluate health policy interventions. IHME is building a dynamic model to predict the impact of an intervention on a specific population within a defined geographic region. Integrating the model with GBD estimates increases the power, accuracy, and efficacy of a tool that can predict the best ways to reduce mortality, disability, prevalence, and cost in any given location for a risk factor or disease. This is a crucial step to helping policy makers, donors, ministries of health, public health workers, and others effectively select, apply, and scale up health interventions by empowering them to review and compare the relative costs, efficacy, and impact of potential interventions on combatting challenges.

    The global COVID-19 pandemic has revealed stark divides in U.S. health outcomes in tragic and profound ways. One way to close the gap and address existing health inequities is through better evidence. Over the next few years, IHME, NIMHD, and the U.S. Burden of Health Disparities Working Group will be producing estimates of burden by race/ethnicity and SES for all U.S. counties. The health policy, research, and practice communities may soon be furnished with evidence to better serve different populations at the local level. This data can help us target interventions more precisely to local needs, thus putting them at our fingertips.

    NOTE:
    Dr. Mokdad was the guest presenter for the NIMHD Director’s Seminar Series (DSS) on March 11, 2021. Learn more about his presentation at the DSS website.

    Reference

    1. Dwyer-Lindgren L., et al. Inequalities in Life Expectancy Among US Counties, 1980 to 2014: Temporal Trends and Key Drivers. JAMA Intern Med. 2017.
    2. Dwyer-Lindgren L., et al. Variation in life expectancy and mortality by cause among neighbourhoods in King County, WA, USA, 1990-2014: a census tract-level analysis for the Global Burden of Disease Study 2015. Lancet Public Healt 2017.


  • In Search of Equity: Rethinking Race and Racism in Science and Medicine

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    Black History Month

    By L. Ebony Boulware, M.D., M.P.H.
    Chief, Division of General Internal Medicine, Department of Medicine
    Director, Duke Clinical and Translational Science Institute
    Duke University School of Medicine

    Recent events compel us to reckon, yet again, with the ongoing legacy of systemic racism in the U.S. The merciless murders of George Floyd, Ahmaud Arbery, Breonna Taylor, and countless other Black individuals through police violence reflect an epidemic of brutality that manifests ongoing and profound racially mediated structural social inequities in the U.S. Compounding this, the recent higher COVID-19 death rates among Black and Hispanic communities have made it clear that race-based structural inequities are directly tied to poor health and further threaten the lives of Black and other minoritized individuals.1 These intersecting realities have brought many in the fields of science and medicine to consider how race and racism are harmfully operationalized through many aspects of our collective experiences.

    I have spent my career investigating race disparities in kidney failure, a condition for which Black Americans have two to threefold greater risk compared to others. Black Americans’ increased risk of kidney failure is compounded by significant race-based inequities in their health care, including 1) suboptimal prevention, 2) delayed recognition and treatment for kidney disease risk factors, 3) lack of access to health care, 4) poor referrals for evidence-based health care, 5) poorer quality dialysis treatment, and 6) lower rates of kidney transplantation.

    In 1999, researchers developed the Modification of Diet in Renal Disease (MDRD) equation to estimate kidney function.2 Investigators hypothesized the existence of a biological difference in kidney function among Black individuals compared to individuals from all other racial and ethnic population groups, based on conventional wisdom and bolstered by weak evidence suggesting differences in Black individuals’ muscle mass compared to others. Despite the lack of a well-substantiated biological rationale for purported racial differences in kidney function, investigators placed a “correction factor” in the form of a coefficient into the equation. The coefficient systematically estimates all Blacks to have 21% better kidney function than non-Blacks.

    Many have recently questioned the use of race-based equations in kidney care and are examining the equations’ potentially harmful contribution to kidney health racial inequities. Two national organizations have developed a task force to consider whether racialized equations should be removed from kidney care altogether. Meanwhile, several U.S. health care systems seeking to embrace anti-racist practices in medicine have independently decided to eliminate the use of these algorithms from their workflows.

    The growing evidence suggests that racialized medical algorithms may contribute to numerous inequities in the medical treatment of Black individuals who are already at increased risk of kidney failure. This has generated recognition that faulty assumptions in science and medicine about race may indeed have negative and systemically racist effects on health care delivery for large populations of Black individuals who suffer inequities in kidney health and kidney care.

    How can the scientific and medical community respond to the emerging recognition that our assumptions about race may lead to harm for the very individuals we seek to help? Many believe a fundamental rethinking of how we conceptualize race in the context of research and medical practice is in order. Several key concepts are essential to starting this process.

    1. We must fully accept race as a non-biological construct based in harmful social ideology through which systemically racist policies and practices are justified.
    2. We must further recognize that unsubstantiated assumptions regarding the biological nature of race have contaminated our scientific and medical reasoning in both subtle and profound ways with harmful results.
    3. We must actively interrogate hypotheses, study designs, inferences, and medical practices that embrace race-based thinking.
    4. We must seek to completely disavow ourselves from potentially racist assumptions.
    5. We must also seek to overturn longstanding pedagogy in science, medical school, and professional training that perpetuate racist thinking.
    6. We must shine a bright light on race and racism as essential contributors to generations of poor health and health inequities for Black and other minoritized individuals.
    7. We must continually seek to illustrate how race and racism affect individuals’ and communities’ health.

    By using our scientific and medical capabilities to generate and disseminate evidence on the precise mechanisms through which structural racism contributes to health inequities, we can target and dismantle harmful policies and practices. We must follow these initial steps with collective ongoing advocacy in our fields and engagement in our communities to ensure that the health of all individuals is promoted through equitable policies and practices.

    Ultimately, it will only be through our careful and humble consideration of the legacy of race and racism in science and medicine that we will be able to meaningfully contribute to discoveries and changes in care necessary to eliminate health inequities across society.

    NOTE:
    Dr. Boulware also helped NIMHD celebrate Black History Month by presenting at the NIMHD Director’s Seminar Series (DSS) on February 4, 2021. Learn more about her presentation at the DSS website.

    References

    1. Williams A, Blanco A. How the coronavirus exposed health 12 disparities in communities of color. Updated May 26, 2020. 13 Accessed July 15, 2020. 14 https://www.washingtonpost.com/graphics/2020/investigati15 ons/coronavirus-race-data-map/
    2. Levey AS, Bosch JP, Lewis JB, Greene T, Rogers N, Roth D. A more accurate method to estimate glomerular filtration rate from serum creatinine: a new prediction equation. Modification of Diet in Renal Disease Study Group. Ann Intern Med. 1999 Mar 16;130(6):461-70. doi: 10.7326/0003-4819-130-6-199903160-00002. PMID: 10075613