NIMHD economist Dr. Nancy Breen shares how big data can lead to greater knowledge about the causes of health disparities and more effective methods for addressing them.

No problem can be solved from the same level of consciousness that created it. – Albert Einstein

By Nancy Breen, Ph.D.
Economist
National Institute on Minority Health and Health Disparities

While at NIMHD, I was asked to lead the Methods and Measurement Science pillar, one of four pillars of the NIMHD Visioning Process. The tasks of this pillar were to establish definitions, harmonize outcomes, and present scientific insights. The objectives were to expand and strengthen analytic methods and to offer guidelines for consistent measurement. Results are published the NIMHD AJPH Supplement, New Perspectives to Advance Minority Health and Health Disparities Research. Health disparity outcome measures are defined in “Overview”¹, “Methodological Approaches to Understanding Causes of Health Disparities” are emphasized², and recommendations are offered for “Harmonizing Health Disparities Measurement”³. Evaluation⁴, an under-used tool in health disparities research, is encouraged with guidelines provided. This blog enhances findings from “Translational Health Disparities Research in a Data-Rich World”⁵.

The role of big data in health disparities research is a burning question. Our interdisciplinary team explored how big data can contribute to reducing health disparities. The collaboration resulted in years of challenging and productive transdisciplinary teamwork that yielded two articles^6,7 and the editorial for NIMHD’s AJPH Supplement, New Perspectives to Advance Minority Health and Health Disparities Research⁵.

While we agreed that large, structured data sets such as the American Community, the National Health Interview and other federal surveys are big data, the perplexing questions had to do with analyzing unstructured big data collections because these were accumulating rapidly from a variety of sources without guidance for analysis. Rich new resources, including social media, electronic health records, sensor information from digital devices, and crowd-sourced and citizen-collected data have the potential to complement more traditional data from health surveys, administrative data, and investigator-initiated registries or cohorts. We concluded that combining types and sources of data and using mixed methods analysis has the potential to provide more timely and detailed analysis that should speed reduction of health disparities.

However, a potential source of harm from big data involves incorporation of implicit bias into analyses or tools using complex data streams. Even though combined data will advance health disparity science, it is important to heed warnings about potential algorithmic bias in machine learning and artificial intelligence. For example, face recognition tools have much higher error rates for women, especially women with darker skin, than for lighter-skinned men because the training sets are overwhelmingly composed of lighter-skinned male subjects⁸. Biased feeder data will lead to similarly biased outcomes and, already, harmful bias has been shown in multiple venues^{9, 10}. Coupling many different types of data increases the risk of harm for individuals. In addition, entire communities may be stigmatized by research findings that emphasize or overstate negative features. Therefore, health disparity researchers must be mindful of both social and individual ramifications of data and results.

“A potential source of harm from big data involves incorporation of implicit bias into analyses or tools using complex data streams. Even though combined data will advance health disparity science, it is important to heed warnings about potential algorithmic bias in machine learning and artificial intelligence.”

Interventions that focus on policies and structures are more effective because they reach broader segments of society and require less individual effort. Knowing the barriers that lead to health disparities faced by community members is key to intervening on the right policies and structures. Big data can supplement understanding of the context of peoples’ lives. We know that fundamental causes and upstream factors generate the social determinants of health that contribute to health disparities. During the pandemic, factors underlying disparities have become especially clear. Greater likelihood of living paycheck to paycheck, less access to health insurance and unemployment insurance, and lack of wealth to finance emergencies have disadvantaged most racial/ethnic population groups more than Whites. Policy responses that would address the structural factors described above could include increasing the minimum wage, extending health and unemployment insurance, and creating a more accommodating bankruptcy process for consumers.

We argue that the most promising intervention approach for reducing health disparities is community-based systematic learning. Our team developed a heuristic, the Iterative Cyclical Approach for Reducing Health Disparities, graphed in Figure 2 of the Health Equity article and reproduced below⁷. If big data can add context and provide more granular data, it will facilitate use of the Iterative Cyclical Approach at all levels of government, including the local level, where change is most likely to occur. For researchers to understand the structures and policies that lead to health disparities, community members will need to participate in all intervention activities from articulating barriers and setting goals through assessment and redesign. For community members to have a sustained voice, decision makers at the affected levels of government need to be involved in the intervention. While not all interventions succeed, all result in learning, and this learning is incorporated into the Iterative Cyclical Approach.

Translation from bench science to real-world practice averages 17 years¹¹. To accelerate translational health disparities research, we argued for an iterative approach using analysis of big data that involves all stakeholders. Research teams need to include data providers, data analysts, social scientists, and decision makers at all levels of government. However, a big data-driven cyclical approach will be challenging. Throughout, research teams will need to avoid the pitfalls of bias and stigma. Policies and structures that maintain the health disparities we see today were fabricated over many years, so long-term investments are needed to mitigate them.

Today, unprecedented opportunities exist to broaden the field of health disparities inquiry using a continuously growing spectrum of diverse and novel data sources which, with the right workforce and tools, will lead to greater knowledge about causes of health disparities and more effective methods for addressing disparities than previously imagined.

References

1. Duran D and Perez-Stable EJ. Novel Approaches to Advance Minority Health and Health Disparities Research. AJPH Supplement 1, 2019, Vol 109, No. S1: S8-S10. Also see HDPulse at https://hdpulse.nimhd.nih.gov/
2. Jeffries N, Zaslavsky AM., Diez Roux AV, et al., Methodological Approaches to Understanding Causes of Health Disparities, AJPH Supplement 1, 2019, Vol 109, No. S1: S28-S33.
3. Duran D, Asada Y, Millum J, Gezmu M, Harmonizing Health Disparities Measurement, AJPH Supplement 1, 2019, Vol 109, No. S1:S25-S27.
4. Dye BA, Duran CG, Murray DM, Cresswell JW, Patrick R, Farhat F, Breen N, Engelgau MM, The Importance of Evaluation Health Disparities Research, AJPH Supplement 1, 2019, Vol 109, No. S1:S34-S40.
5. Breen N, Zhang X, Jackson JS. Wood F, Wong DWS. Translational Health Disparities Research in a Data-Rich World. AJPH Supplement 1, 2019, Vol 109, No. S1: S41-S42.
6. Zhang X, Pérez-Stable EJ, Bourne PE, Peprah E, Duru OK, Breen N, Berrigan D, Wood F, Jackson JS, Wong DWS, Denny J. Big Data Science: Opportunities and Challenges to Address Minority Health and Health Disparities in the 21st Century. Ethn Dis. 2017 Apr 20;27(2):95-106.
7. Breen N, Berrigan D, Jackson James S, Wong DWS, Wood F, Denny J, Zhang X, Bourne P, Translational Health Disparities Research in a Data-Rich World, Health Equity, 2019, Vol 3, No.1 (https://www.liebertpub.com/doi/10.1089/heq.2019.0042)
8. Buolamwini J, Gebru T. Gender shades: Intersectional accuracy disparities in commercial gender classification. Paper presented at: Conference on Fairness, Accountability and Transparency, 2018; 81:1–15 (available at pdf (mlr.press))
9. Hooker SE, Jr., Woods-Burnham L, Bathina M, et al. Genetic ancestry analysis reveals misclassification of commonly used cancer cell Lines. Cancer Epidemiol Biomarkers Prev. 2019; 28:1003–1009.
10. Fuster A, Goldsmith-Pinkham P, Ramadorai T, et al. Predictably unequal? the effects of machine learning on credit markets. March 2018. https://cepr.org/sites/default/files/SSRN-id3072038.pdf. Last accessed 11/5/19
11. Morris ZS, Wooding S, Grant J. The answer is 17 years, what is the question: understanding time lags in translational research. J R Soc Med. 2011; 104:510–520.

By Eliseo J. Pérez-Stable, M.D.
Director, National Institute on Minority Health and Health Disparities

On November 10, NIMHD shared an image through our online channels that was intended to reflect the results of a recent study, which found that police killings are dramatically underreported. Mortality from police violence is more than two times greater than what is reported in the U.S. National Vital Statistics System—and the under-reporting is particularly marked for African American individuals. I was one of the co-authors of this research paper and I am profoundly saddened that so many people die during encounters with police every year.

The picture chosen was intended to reflect the unfortunate reality that occurs all too often. However, the image was insensitive and deeply disheartening. Our thoughtful research community has made it clear to us that by sharing this image, NIMHD unintentionally retraumatized people who experience the indignities, dangers, violence, and stress of racism every day. We sincerely apologize. We have removed the image and will do better in future postings.

Improving the health of racial and ethnic minority groups is the everyday work of this Institute. NIMHD is committed to continuing to lead the scientific efforts to develop, implement, and evaluate interventions to manage, reduce, and eliminate structural racism and discrimination.

For Native American Heritage Month, learn how understanding culture helps prevent alcohol misuse among American Indian/Alaska Native youth.

By George F. Koob, Ph.D.
Director, National Institute on Alcohol Abuse and Alcoholism

Supporting research to better understand and address alcohol-related health disparities and improve the health of underserved populations is one of the highest priorities of the National Institute on Alcohol Abuse and Alcoholism (NIAAA).

Among our efforts is NIAAA’s long-term investment in preventing underage drinking. Early initiation of alcohol consumption and heavy drinking increases the risk of alcohol use disorder (AUD) and related consequences over a person’s lifetime, and alcohol intervention efforts started at a young age can positively influence a young person’s path in life. Research indicates that prevention efforts involving the community and/or informed by the community’s cultural beliefs hold promise for preventing and reducing underage drinking.

In a decades-long project supported by NIAAA, Stacy Rasmus, Ph.D., at the University of Alaska, Fairbanks, in collaboration with the Yup’ik Native Alaskan community, is examining how tapping into a community’s culture can provide a cornerstone for youth substance misuse and suicide prevention efforts. Together, they developed the Qungasvik (Tools for Life)” Toolbox” intervention, which uses community, cultural, and historical connectedness to build protective factors against suicide and alcohol misuse at individual, family, and community levels. Research findings have shown that Qungasvik is effective in reducing co-occurring youth alcohol misuse and suicide risk, and ultimately, AUD and death by suicide.

Other NIAAA-supported studies have demonstrated the importance of community mobilization in preventing underage drinking among American Indian/Alaska Native (AI/AN) youth. Kelli Komro, Ph.D., at Emory University, and colleagues worked with the Cherokee Nation to implement and test the effectiveness of Communities Mobilizing for Change on Alcohol, a community-organizing intervention designed to reduce youth alcohol access. The community-level intervention was implemented and evaluated alongside CONNECT, a school-based alcohol screening and brief intervention. The researchers found that the prevention strategies either alone or in combination were effective in reducing alcohol use among American Indian (AI) and other youth living in rural communities.

In another study, Roland Moore, Ph.D., at the Pacific Institute for Research and Evaluation, and colleagues evaluated a combined community- and individual-level intervention on underage drinking among AI youth living on rural California reservations. The community interventions included restricting alcohol sales to minors as well as activities to raise awareness of the risks of underage drinking and to mobilize community support for the interventions. The individual interventions consisted of either culturally tailored brief motivational interviewing or education about the consequences of drinking and dangers of binge drinking, assisted by a therapist. Among youth who drink, researchers found reductions in the frequency of drinking and heavy drinking among AI youth exposed to the interventions relative to non-AI/AN students from their region and rural AI/AN students outside of the intervention area.

Pictured are two youths who are members of the Yup’ik community in Alaska, which is collaborating with an NIAAA grantee on an alcohol-use prevention program. Photo Credit: Georgianna Ningeulook, Scammon Bay, Alaska

These studies demonstrate that community-based interventions, alone or in combination with individual-level interventions, can play an important role in preventing underage drinking among AI/AN youth. It is essential that that we continue to develop, implement, and sustain culturally informed, effective, evidence-based interventions to prevent alcohol and other substance misuse, as well as the many related consequences from suicide to AUD, among underserved youth across the nation.

References

1. Rasmus SM, Trickett E, Charles B, John S, Allen J. The qasgiq model as an indigenous intervention: Using the cultural logic of contexts to build protective factors for Alaska Native suicide and alcohol misuse prevention. Cultur Divers Ethnic Minor Psychol. 2019 Jan;25(1):44-54. doi: 10.1037/cdp0000243.
2. National Institute on Alcohol Abuse and Alcoholism. NIAAA to Host Webinar on Interventions in American Indian and Alaska Native Communities. In: NIAAA Spectrum Vol. 12, Issue 3, Fall 2020 Accessed May 2021.
3. Komro KA, Livingston MD, Wagenaar AC, Kominsky TK, Pettigrew DW, Garrett BA; Cherokee Nation Prevention Trial Team. Multilevel Prevention Trial of Alcohol Use Among American Indian and White High School Students in the Cherokee Nation. Am J Public Health. 2017 Mar;107(3):453-459. doi: 10.2105/AJPH.2016.303603. Epub 2017 Jan 19.
4. Moore RS, Gilder DA, Grube JW, Lee JP, Geisler JA, Friese B, Calac DJ, Finan LJ, Ehlers CL. Prevention of Underage Drinking on California Indian Reservations Using Individual- and Community-Level Approaches. Am J Public Health. 2018 Aug;108(8):1035-1041. Epub 2018 Jun 21.
5. National Institute on Alcohol Abuse and Alcoholism Strategic Plan 2017-2021. Accessed May 2021.

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.

By Eliseo J. Pérez-Stable, M.D.
Director, National Institute on Minority Health and Health Disparities

We at the National Institute on Minority Health and Health Disparities are excited and proud to be a part of the Transformative Research to Address Health Disparities and Advance Health Equity initiative, a new effort coordinated by the NIH Common Fund. This new set of 11 grants provides roughly $58 million over five years to support innovative, creative translational health disparities research projects across the country. This new initiative speaks directly to NIMHD’s mission to improve minority health, reduce health disparities, and promote health equity, and encourages bold new solutions to solve enduring problems.

Despite scientific and technological discoveries that have improved the health of the U.S. population overall, racial, and ethnic minority populations, socioeconomically disadvantaged groups, underserved rural populations, and sexual and gender minorities in the U.S. share an unfair burden of diseases such as diabetes, heart and respiratory diseases, HIV, and obesity. The recent COVID-19 pandemic has further underscored how disease can disproportionately affect vulnerable populations the hardest.

In our work, characterizing the drivers of health inequities demands a better understanding of social determinants of health, complex underlying causes of health disparities, and effective interventions specifically designed to reduce disparities in these populations.

To attract innovative ideas and perspectives to health disparities research, these new grants encourage a focus on pressing research problems, new approaches, and sizeable, rapid impacts that leverage intersectoral interventions. Each project has an innovative intervention component and focuses on one or more of the NIH-designated populations that experience health disparities in the U.S.

For example, researchers and community-based research collaborations will

• Test financial interventions that address structural racism in minority neighborhoods.
• Provide gender-affirming mental health care and support to reduce suicide and stress-related health disparities in Black transgender and gender diverse youth.
• Apply maternal-child health and nutrition interventions at the system level to reduce food insecurity and its harmful health consequences in racial and ethnic minority communities in the Southwest.
• Implement an app-based intervention to help parents and children, particularly in White populations, hold critical and honest conversations about race, and the role that they have in remedying the pervasive legacy of racism and eliminating discrimination and prejudice.
• Use new technology developed during the COVID-19 pandemic to deliver physical and mental health interventions for diverse populations with and without disabilities.
• Develop and evaluate a new model of school-based, telehealth-driven preventive care for underserved rural and socioeconomically disadvantaged children.

There are additional notable grant programs under this initiative, and I encourage readers to learn more about them by viewing the NIH press release. This initiative is expected to increase the competitiveness of investigators and expand the base dedicated to health disparities research at Minority Serving Institutions (MSIs) with less resources, also central to NIMHD’s mission. Through its innovative approaches to health disparities research, and research funding targeted to MSIs, this initiative will support the goals of UNITE, an NIH effort launched in early 2021 to address structural racism and racial inequities throughout the biomedical research enterprise.

Not least of all, we are thrilled at the opportunity of this NIH-wide initiative to collaborate with NIH partners pursuing the goals of improving minority health, reducing health disparities, and promoting health equity, including the Office of Research on Women’s Health, the Tribal Health Research Office, the National Institute of Nursing Research, the National Institute of Dental and Craniofacial Research, and other Institutes, Centers and Offices.

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 segregation^3,4,5. 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.

Co-authored by
Eliseo J. Pérez-Stable, M.D.
Director, National Institute on Minority Health and Health Disparities

Monica Webb Hooper, Ph.D.
Deputy Director, National Institute on Minority Health and Health Disparities

As leaders of the National Institute on Minority Health and Health Disparities (NIMHD), we want to express our sincerest thanks to the NIMHD scientific community and staff for their efforts as we continue to experience the most challenging public health crisis in over a century. Your rapid-response efforts to document, understand, and address the undue burden of COVID-19 among populations with health disparities—the very groups already dealing with longstanding disparities in life expectancy and overall well-being—have not gone unnoticed. We deeply appreciate your unwavering commitment to research designed to uncover the causes of health disparities, develop interventions to address them, and promote health equity.

Since March 2020, the COVID-19 pandemic has radically affected us in our daily lives—as individuals, families, and as members of the biomedical research workforce. We have all had to manage unfathomable adjustments and elevated stress both personally and professionally. The pandemic has disproportionately affected the lives and livelihoods of populations that experience health disparities in even more pronounced ways. And these groups—racial and ethnic minority communities, socioeconomically disadvantaged persons, people who live in rural underserved areas and sexual and gender minority persons—are prioritized by NIMHD.

The COVID-19 pandemic has also laid bare the inequities embedded within systems of health care, public health, and science, as well as employment, housing, and education. We are proud that as the U.S. and the world have grappled with this unprecedented public health crisis, NIMHD and our community have become an essential part of the scientific response. You have undertaken critical and creative efforts to maintain your research programs, staff, and community partnerships. You have continued to engage with participants as they, too, navigated this new and unfortunate reality, often struggling through the distress and pain associated with the pandemic. Below, we outline a few of these efforts, recognizing that they represent only a fraction of what could be shared.

• Researchers responded to calls from community partners requesting connections to COVID-19 information, resources, and services. As a result, new collaborations and partnerships were formed and priorities shifted to focus on COVID-19 risk mitigation and prevention.
• As COVID-19 precluded face-to-face interactions with participants, research teams made swift adjustments, working closely with community partners and health systems to develop and implement COVID-safe procedures to facilitate recruitment, data collection, and intervention delivery. They learned that participants generally maintained their interest in study participation, and, at times, had even greater availability to participate in online, virtual, or telephone-administered activities.
• Researchers also noted and attempted to address barriers to remote participation, underscoring the digital divide that remains in many medically underserved communities, such as lack of (stable) internet access and smart phone costs. Teams also went to extraordinary lengths to collect biological samples (e.g., saliva) via mail, examining the feasibility and utility of doing so, as well as managing delays in sample processing.

The COVID-19 pandemic continues to affect our lives and those of our community partners, participants, and patients. There is great uncertainty about when, if ever, activities may return to their pre-pandemic state. We recognize that in some cases, research teams have experienced reduced enrollment and missing data, and have had to suspend operations on specific projects. We hope that these conditions improve in the coming months so that your important contributions to communities and the overall body of knowledge will endure. We are confident that our communities will continue to be resilient, rise to the challenge, and adapt to current conditions.

We would be remiss if we did not convey our deep gratitude to the NIMHD staff. Our leaders, program directors, scientific review administrators, grants management staff, policy, evaluation, and reporting staff, communications staff, and our mission-critical administrative and technological support teams have gone above and beyond to navigate the challenges of institute operations with extraordinary flexibility, teamwork, and action. We feel like work has never been as intense as it has in the time of COVID-19, but none of it would be possible without the dedicated people who work at NIMHD. The goal of making the world better is a potent motivator, and these efforts are meaningful and important.

Our appreciation and thanks to the entire NIMHD biomedical research enterprise cannot be expressed enough. Let’s continue to take care of ourselves and our families as we work to make positive differences in the lives of the communities we serve.

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.

By Eliseo J. Pérez-Stable, M.D.
Director, National Institute on Minority Health and Health Disparities

The COVID-19 pandemic has brought minority health and health disparities new attention on the national stage. COVID-19 has disproportionately affected African Americans, American Indians and Alaska Natives, Native Hawaiians and Pacific Islanders, and Latinos and Latinas.

This is a microcosm of the health equity challenge that plagues the U.S.

As in most conditions with health disparities, the causes are complex. People from some of these groups are less likely to have health insurance than Whites. Inequities in access to quality education and limited economic opportunities for many, mean that many minority groups are disproportionately represented among the ranks of essential workers, such as those who work in farms, grocery stores, and support staff in health care settings and long-term care facilities, and less able to avoid the virus at work than people who work in office jobs.

In this moment when so many Americans are looking to the biomedical research enterprise for help, we are proud to be able to provide a strategic, concrete plan for advancing minority health and health disparities research, capacity building and outreach. Today, I am proud to share the new NIH-Wide Minority Health and Health Disparities Strategic Plan 2021-2025: Taking the Next Steps.

Thanks in large part to investment through the NIH, healthier lifestyles, and medical advances have made it possible for Americans to live longer and healthier lives than ever before. However, not all Americans have benefited equally from these advances. Health disparities persist, disproportionately affecting racial and ethnic minority populations, people with less privileged socioeconomic status, underserved people who live in rural areas, and sexual and gender minorities.

At NIMHD we are working toward a future in which all populations will have an equal opportunity to live long, healthy, and productive lives. Part of how we honor this commitment is through the programs we support directly and the work of our own intramural researchers. But we also have a role that spans the 27 institutes and centers that make up the National Institutes of Health. We at NIMHD are tasked with coordinating NIH’s research related to minority health and health disparities. As part of that we have led the process to develop a strategic plan for research in these vital areas for all of NIH.

This strategic plan charts the course for NIH to advance research on minority health and health disparities. In the plan, we lay out a focused vision for advancing the field of minority health and health disparities over the next 10 to 15 years.

The core of minority health science is understanding why a racial or ethnic minority group has specific health outcomes. Minority health research intends to identify factors contributing to health conditions—whether or not a health disparity is identified and including conditions where a minority population has better outcomes.

Health disparities arise from the relationship of a wide range of factors, from biological and behavioral factors, to the physical environment, to sociocultural factors and to societal policies and practices such as housing and hiring discrimination. These and other determinants of health interact to lead to poor health outcomes. The complex interrelationships between these factors challenge researchers to uncover the mechanisms and develop interventions that may help reduce health disparities.

The plan encompasses three priority areas: scientific research; research-sustaining activities; and outreach, collaboration, and dissemination of this work. Within each priority area are two to four goals; each goal is supported by strategies, intended to capture ways in which NIH can advance the sciences of minority health and health disparities.

• For example, in the priority area of scientific research, one of our goals is to improve the methods and tools that support health disparities research, and one of the strategies supporting that goal is to develop common metrics that can be used to measure health disparities across different health conditions and populations.
• In the research-sustaining activities priority area, one goal relates to increasing the racial and ethnic diversity of the biomedical workforce; one of the strategies that will move us closer to that goal is to promote programs at research-intensive institutions that expand the pool of applicants from health disparity populations.
• In the area of outreach, collaboration, and dissemination, one goal is to cultivate and expand the community of researchers and advocates in minority health and health disparities. One of our strategies is to promote collaboration across the federal government.

These are just three examples of the many goals and strategies that are part of our strategic plan. In addition, the Strategic Plan lists specific leap goals linked to topic areas and potentially achievable in the next 5 to 10 years. Together, these make up a concrete, actionable document that will guide NIH’s minority health and health disparities research program for years to come. We have heard from many voices in the process of developing this strategic plan, and we are excited for the future.

While NIH cannot solve the problem of systemic racism alone, we can apply the science of minority health and health disparities to understand the mechanisms by which discrimination and racism lead to poor health outcomes, then develop and disseminate science-based methods for mitigating these issues, improving the health of minorities, and decreasing health disparities. With the help of this plan, NIH can continue to produce meaningful, measurable improvements in minority health and reductions in health disparities, through the end of the pandemic, over the next five years, and beyond. Through these efforts, we will advance health equity and help ensure a long and healthy life for all Americans.

Mental illness does not discriminate, and more than 40 million Americans experience them each year regardless of race, ethnicity, gender identity, or socioeconomic status. July is National Minority Mental Health Month—a time to raise awareness about the unique psychological struggles that people from racial and ethnic minority communities face.

For National Minority Mental Health Month, NIMHD is sharing reflections and resources about the challenges, stigma, and access to mental health providers minorities often experience. We encourage you to educate yourself, your families, and your communities about mental health and emotional wellbeing.

Reflections: Prior NIMHD Insights Blog Posts

• July Is the Best Month to Start a New Year of Working on Mental Health
• American Indian/Alaska Native Mental Health: Our Voices, Traditions and Values to Strengthen our Collective Wellness
• Centering Structural Inequities in Conversations on Mental Health Among People of Color
• My Message to African American Men: There’s No Shame in Seeking Help with Mental Health
• Healthy Mind Initiative Addresses Mental Health of Asian American and Pacific Islander Youth
• Minorities and Mental Health: Moving Beyond Stigma

Resources:

• Brother You’re on My Mind Toolkit
• National Institute of Mental Health (NIMH): Supporting Mental Health During COVID-19
• Substance Abuse and Mental Health Services Administration (SAMHSA) Report on COVID-19 and Behavioral Health Disparities in Black and Latino Communities in the U.S.
• NIMH: Coping with Traumatic Events (nih.gov)
• NIMH: Helping Children and Adolescents Cope with Disasters and Other Traumatic Events: What Parents, Rescue Workers, and the Community Can Do (nih.gov)
• HHS Office of Minority Health (OMH): Violence Related Trauma Resources
• SAMHSA: Behavioral Health Equity
• Department of Health and Human Services: Mentalhealth.gov