Archives: 2019

By Griffin P. Rodgers, M.D., M.A.C.P.
Director, National Institute of Diabetes and Digestive and Kidney Diseases

Recently, we received a thank you note from a student who participated in a National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) program that provides research training to high school and college students from underrepresented groups. A year ago, the student wrote, she had no idea what scientists did, and now she teaches laboratory procedures to other students. She was also selected to present her work at the 2019 American Society for Nephrology’s Kidney Week.

This aspiring scientist, a first-generation college student, took part in NIDDK’s Short-Term Research Experience for Underrepresented Persons (STEP-UP), and stories like hers support our Institute’s efforts to build a strong pipeline of talented, diverse biomedical researchers.

Talent is universal, but opportunity is not. It’s a gap I believe we have a responsibility to bridge. Our programs stem from a firm understanding: diversity strengthens science. Increasing diversity in the scientific workforce will enable us to better tackle the diseases in NIDDK’s mission areas, many of which disproportionately affect minority and underrepresented populations. As discussed in a 2016 PLOS Medicine article on improving health equity, scientists from diverse backgrounds can offer innovative perspectives to facilitate problem-solving, as well as encourage people from their own communities to participate in research studies.

STEP-UP is one of several NIDDK programs aimed to nurture future generations of scientists from diverse backgrounds. The NIDDK Diversity Summer Research Training Program, for example, gives college students from underrepresented groups the opportunity to conduct research in NIDDK labs, and the Medical Student Research Program in Diabetes enables students to conduct research at an NIDDK-funded diabetes center, with special efforts made to recruit female and minority students.

NIDDK also funds Aspirnaut™ Summer Research Internships, which bring high school and undergraduate students from rural and disadvantaged backgrounds to Vanderbilt University Medical Center for mentored laboratory training.

I recently read about a graduate of the program—an African-American man—from one of the poorest areas of Arkansas, where science may not feel like an obtainable career path. After completing his bachelor’s degree in biology, he went on to obtain a master’s degree and now teaches science to middle schoolers.

I cannot speak enough about the importance of this man’s work—of the need to expose young minds to the world of science and give them opportunities to enter STEM fields. I’m a product of it myself. My father was a high school science teacher, and my mother was a public health nurse. They both instilled in me a love of science that grew into a lifelong passion.

One of our newer programs, the NIDDK Elementary School Tour, brings local students from low-income areas to the NIH to interact with NIDDK staff, tour our labs, and experience the excitement of scientific discovery. And through the USA Science and Engineering Festival’s Nifty Fifty program, I visit schools to speak to young students about science.

While we foster the growth of our future scientists, we also support minority health researchers throughout their careers. NIDDK offers several funding opportunities to promote diversity in health-related research. Our Network of Minority Health Research Investigators (NMRI) encourages minority scientists to conduct research within NIDDK’s mission areas. The NMRI facilitates career development in many ways, including connecting junior investigators with senior mentors and providing pathways for networking and collaboration, such as through the NMRI annual meeting.

As proud as I am of NIDDK’s strides to cultivate a diverse research pipeline, I know we still have work to do. By giving opportunity to talent through our training and outreach programs, as well as the research we conduct and support, NIDDK is working persistently to achieve greater health equity, with the goal of helping all people live healthier, longer lives.

By Priscah Mujuru, DrPH, MPH, RN, COHN-S
Scientific Program Officer, Community Health and Population Sciences
National Institute on Minority Health and Health Disparities

Rural health to me, is a lived experience. I was born in the rural areas of Zimbabwe. In my village, when a pregnant woman couldn’t make it to the hospital, there were no gloves, clean working stations, or sanitized rooms to ensure safe childbirth. A female in labor would be aided in her delivery by other village women who used what they had: hot water, rags, old razors, and even twine made of tree bark to help with the delivery. We never thought we were poor, and in fact we were proud and happy of who we were.

I was fortunate that my father valued education and sent all his children, 6 girls and 4 boys, to primary and secondary schools. He felt that it did not matter if you were a boy or girl, man or woman, everyone should be given an opportunity to get an education. In a small village, to send so many children to school when there was work to be done, was very rare.

I took my father’s lessons to heart and continued my education. I spent almost 10 years in nursing and midwifery practice, and served as a clinical trials research nurse. I also obtained a degree in Occupational /Industrial Hygiene. My education took me to many wonderful places and I eventually landed a position as an Assistant Professor and Occupational Health Nurse Specialist at the Institute of Occupational and Environmental Health and Community Medicine in the School of Medicine at West Virginia University. My first significant assignment was to research public health needs for an MPH program in rural WV. I was mystified that the idea of “rural” had any sort of existence in West Virginia, let alone the United States of America!

That is when I realized that rural public health is a global issue and it affects people in varying degrees all over the world. At least 20% of the United States population live in the rural areas. At NIMHD, I am well positioned to address the health disparities issues within diverse rural populations of whites, blacks, Hispanics, Native Americans and U.S. immigrants. There is a need for researchers to address the many social determinants of health in rural populations.

November is designated National Rural Health Month. I invite you to join NIMHD and other NIH Institutes and Centers for the Inaugural Rural Health Seminar.

Date: Monday, November 18, 2019
Time: 9:30 a.m. – Noon ET
Location: NIH Main Campus, Natcher Conference Center (Building 45, Rooms A/B)

The seminar will bring together researchers, medical practitioners and others to explore topics in rural health, and to share research ideas about how innovations in clinical and translational science could improve rural health outcomes.

You can register for the seminar here or you can watch the NIH Videocast live or later. To join the conversation on social media, please use hashtag #RuralHealth.

I hope you will join us for this event.

Co-authored by
Tanya Agurs-Collins, Ph.D., RD
Health Behaviors Research Branch
Division of Cancer Control and Population Sciences
National Cancer Institute, NIH

Susan Persky, Ph.D.
Associate Investigator and Head of the Communication, Attitudes, and Behavior Unit
Immersive Virtual Environment Testing Area, Social and Behavioral Research Branch
National Human Genome Research Institute, NIH

As part of the NIMHD special issue New Perspectives to Advance Minority Health and Health Disparities Research, we and our co-authors focused on designing and assessing multilevel interventions to improve minority health and reduce health disparities.¹ Multilevel interventions, based on the socioecological framework², involve intervening on at least two levels of influence at the same time. We chose this topic because multilevel interventions are an extremely challenging and often expensive undertaking that require myriad decisions and plans, yet it is becoming clear that such interventions are a necessary approach for overcoming great disparities evident in the public’s health, particularly for conditions like obesity.

Obesity is a risk factor for several chronic diseases, including cancer. Approximately 40% of the general U.S. population is classified as having obesity. When racial and ethnic differences are examined, the highest obesity rates are found among African Americans (54.8%), followed by Hispanics (50.6%), Whites (38%), and Asian Americans (14.8%).³ These disparity rates are related in part to major changes in the food and built environments, resulting in excessive consumption of energy-dense foods and physical inactivity, which is more prevalent in minority communities. Although multilevel approaches are taking hold in this area, we still have a long way to go in addressing gaps between majority and minority populations.

Numerous interventions aimed at reducing calorie intake and increasing physical activity have focused on individual-level factors among various racial/ethnic populations. These interventions often hinge on the notion that if we educate individuals about what comprises a healthy diet and enough physical activity, they will change their behavior, resulting in the reduction of obesity. By now, we are well aware that weight and obesity are extremely complex and that this individual approach is insufficient. However, current interventions don’t often consider factors beyond the individual’s control. For example:

• Recommendations to eat a rainbow of fruits and vegetables are useless when these foods are out of reach for financial reasons.
• Suggestions to increase home cooking are not feasible when people commute hours to jobs in high-cost areas.
• Telling people to avoid ultra-processed foods is no match for the incessant stream of advertisements and snack formulations to make those items hyperpalatable.
• Children’s health education can’t be fully effective in schools without physical education and recess.

It’s clear that obesity simply cannot be addressed at the individual level alone, so it is crucial to mount community, neighborhood, and policy-level interventions in combination.

Efforts to study multilevel interventions are certainly emerging. Take, for example, a church-based multilevel obesity intervention with African Americans and Latinos that targets individuals (cooking and nutrition classes), the congregation (fruit and vegetable garden), and the community (mapping of food and physical activity environments). This study found significant weight loss, less weight gain, and healthier diets as a result;⁴ however, the study had a limited ability to assess intervention effects, due to small sample size, loss of a control church, and uncertainties related to intervention dose and duration.

Another study addressed individuals’ diet and physical activity, groups via civic engagement, and community factors through grocery store audits, environmental assessments, and development of a community guide. This intervention produced significant reductions in body mass index (BMI) and cardiovascular risk factors among rural women in medically underserved areas⁵ but was not designed to evaluate civic engagement’s independent and additive effects. In another example, researchers targeted African American youth–caregiver dyads in low-income areas. The researchers intervened at recreation centers and small food stores and provided interpersonal support through peer mentoring,⁶ producing modest reductions in children’s BMI percentiles, but were unable to alter the food environment.

Interventions like these highlight the complexity inherent in undertaking multilevel interventions. As we point out in the paper, there is much work needed to develop multilevel intervention strategies to push forward intervention development, methodology, and evaluation approaches. We challenge researchers to build teams that can develop the needed strategies to enable interventions that broadly consider levels of influence to identify the mechanisms and pathways that effectively reduce health disparities.

References

1. Agurs-Collins, T., Persky, S., Paskett, E.D., Barkin, S.L., Meissner, H.I., Nansel, T.R., Arteaga, S.S., Zhang, X., Das, R., and Farhat, R. (2019). Designing and Assessing Multilevel Interventions to Improve Minority Health and Reduce Health Disparities. American Journal of Public Health, 109(S1), S86-S93. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6356127/.
2. Stevens, , Pratt, C. Boyington, J., Nelson, C., Truesdale, K. P., Ward, D. S., Lytle, L., Sherwood, N.E., Robinson, T. N., Moore, S., Barkin, S. Cheung, Y.K., Murray, D. M. (2017). Multilevel Interventions Targeting Obesity: Research Recommendations for Vulnerable Populations. American Journal of Preventive Medicine, 53(1), p.115-124. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5571824/
3. Hales C.M., Carroll M.D., Fryar C.D., Ogden C. L. (2017). Prevalence of Obesity Among Adults and Youth: United States, 2015-2016. NCHS Data Brief (288), p 1-8. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/29155689.
4. Derose, K.P., Williams, M.V., Florez, K.R., Griffin, B.A., Payan, D.D., Seelam, R., Branch, C.A., Hawes-Dawson, J., Mata, M.A., Whitley, M.D., Wong, E.C. (2019). Eat, Pray, Move: A Pilot Cluster Randomized Controlled Trial of a Multilevel Church-Based Intervention to Address Obesity Among African Americans and Latinos American Journal of Health Promotion 33(4) P. 586-596. Retrieved from https://journals.sagepub.com/doi/full/10.1177/0890117118813333.
5. Seguin, R.A., Paul, L., Folta, S.C., Nelson, M.E., Strogatz, D., Graham, M., Diffenderfer, A., Eldridge, G., Parry, S. A., (2018). Strong Hearts, Healthy Communities: A Community-Based Randomized Trial for Rural Women. Obesity (Silver Spring, 26(5), P. 845-853. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5915907/.
6. Shin, A., Surkan, P. J., Coutinho, A.J., et. al., (2015). Impact of Baltimore Healthy Eating Zones: An Environmental Intervention to Improve Diet Among African American Youth. Health Education & Behavior, 42 (IS) p. 97S-105S. Retrieved from https://journals.sagepub.com/doi/pdf/10.1177/1090198115571362.

By Arline T. Geronimus, Sc.D.
Professor, Health Behavior and Health Education, School of Public Health
Research Professor, Population Studies Center, Institute for Social Research
University of Michigan

My monozygotic twins—now young men—never engaged in parallel play with each other. Parallel play is a type of toddler-to-preschool play where, even though two or more children are in the same room or even the same sandbox, they each remain absorbed in their own personal activity and do not interact. Yet before they could walk or talk, my sons delighted in playing together, cooperating on projects, and putting on musical performances that they would end by bowing in unison, each one’s arm around the other’s waist. They scaled higher heights, literally, than playing alone. We found them lying on the tops of our highest kitchen cabinets, giggling together, when they were 2. Even strapped into their stroller, they enacted perfectly synchronized and complexly coordinated routines we called “stroller surfing,” which were at once wonderful and hair-raising to watch and noticeably enchanting to passersby.

My sons were then—and they remain to this day—among the most engaged, charismatic, sociable, and creative people I have known. Most likely being twins had something—maybe even a lot—to do with this. While causality is hard to prove, I often think that their continuing creativity and ability to work things out owes much to having been able to play interactively from the beginning. Maybe it was a twin thing, but it set in motion positive recursive processes.

As part of the NIMHD visioning process on life course approaches to causes of health disparities, we began with members in parallel play. We all agreed that life course approaches are critical to understanding the development and perpetuation of social inequities in health, but we came with strong ideas based on our own scholarly histories on what a life course approach was and why it mattered. Our first instinct was to turn to parallel play rather than do the harder, more creative work of integrating our different perspectives, evidence bases, and scholarly commitments. Working together over several months and iterations to produce one analytic essay on the etiology of health disparities through a life course lens, we set the stage for a more integrated theoretical and scientific approach.¹

We established that our different perspectives on the life course could be categorized as developmental and structural. The developmental life course approach is theorized in the developmental origins of health and disease (DOHaD) hypothesis. It focuses attention on the role of critical and sensitive developmental stages in shaping later life health. Gene–environment interactions during fetal, infant, early childhood, and adolescent development produce the biological architecture that at a minimum heavily influences and perhaps even programs later life health. The rationale is that heightened plasticity in these early periods enables environmental exposures or deficiencies to more profoundly affect development than at other times, with enduring effects. Mechanistically, adverse uterine or childhood environments activate epigenetic modifications during these highly plastic periods that remain consequential across the life span.²

The structural life course approach can be encapsulated by the theory of weathering³, a cumulative stress perspective grounded in social research. It proposes that different social identity groups— identified by race, ethnicity, religion, sexual orientation, gender, socioeconomic position, place, immigrant status, et cetera—have different lived experiences that are structured in part by history, policies, power dynamics, and dominant cultural frameworks. These frameworks influence the distribution, cadence, and intensity of life course demands and stressors across various social groups, as well as the coping resources these groups have available. Mechanistically, the structural perspective focuses on the health effects of physiological stress processes that are chronically activated in marginalized groups and the persistent high-effort coping this requires of them, especially in the young adult through middle ages, when family leadership roles are assumed. The resultant stress-mediated wear and tear on important body systems and cellular integrity precipitate accelerated aging, the dysregulation of body systems by midlife, and the early onset of chronic diseases of aging.⁴

Although they have different emphases and draw on different scientific frames and skills, these two perspectives are not mutually exclusive. For some overlapping and some different reasons, each perspective is hard to prove.⁵ In parallel play, advocates of each perspective make a case for causal evidence of that perspective, yet neither case is subject to constructive cross-examination by the other, and neither benefits from the skills and knowledge the other may have to fill in gaps.

Moreover, refinements of theory, empirical tests, and translation of findings to promote heath equity will surely benefit from the deep integration of both perspectives, including interdisciplinary work across the biomedical and social sciences—and even the humanities to discern important historical, policy, and ethnographic influences on lived experience that shape health across the life course.⁵

But scientists with different backgrounds, skill sets, and perspectives continue to parallel play. And worse, power dynamics apply to favor biomedical research, inasmuch as substantially more resources are awarded to elucidating the developmental compared with the structural perspective. Meanwhile, population health inequities persist and, in some areas, have grown. We in the scientific community could take a note from my 2-year-old sons. Engaging in interactive play can lead to more creative, enchanting, and productive synergies than continuing to parallel play in the same sandbox.

References

1. Jones, N. L., Gilman, S. E., Cheng, T. L., Drury, S. S., Hill, C. V., & Geronimus, A. T. (2019). Life course approaches to advance the understanding of the causes of health disparities. American Journal of Public Health, 109(S1), S48–S55. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6356123/
2. Gluckman, P. D., Hanson, M. A., Cooper, C., & Thornburg, K. L. (2008). Effect of in utero and early-life conditions on adult health and disease. New England Journal of Medicine, 359(1), 61–73. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3923653/
3. Geronimus, T., Pearson, J. A., Linnenbringer, E. P., Schulz, A. J., Reyes, A., Epel, E. S., . . . Blackburn, E. H. (2015). Race/Ethnicity, poverty, urban stressors and telomere length in a Detroit community-based sample. Journal of Health and Social Behavior, 56(2), 199–224. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4621968/
4. Geronimus, T. (2013). Deep integration: Letting the epigenome out of the bottle without losing sight of the structural origins of population health and disease. American Journal of Public Health, 103(S1), S56–S63. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3786760/

By Nancy Jones, Ph.D., M.A.
Scientific Program Officer, Community Health and Population Sciences
National Institute on Minority Health and Health Disparities

In 2015, the National Institute on Minority Health and Health Disparities (NIMHD) began an initiative to create a scientific vision to transform minority health and health disparities. I served as a co-chair for one of the three pillars for the visioning process with several other NIMHD colleagues and guest editor for a supplement of the American Journal of Public Health (AJPH), entitled New Perspectives to Advance Minority Health and Health Disparities Research.

The science visioning initiative sought to do something that had not been done before: tackle health disparities across diseases. Health disparities arise from multiple upstream factors from the sociocultural and physical/built environments interacting with downstream behavioral and biological mechanisms. These pathways result in worse health outcomes for many diseases and conditions for racial/ethnic minorities and other health disparity populations. Often, scientific visioning at the National Institutes of Health (NIH) develops research strategies to address a single disease or condition. This visioning process envisioned a roadmap that can catalyze research to understand and address health disparities across multiple diseases and conditions.

Thus, NIMHD brought together experts from a range of scientific disciplines and worked with Institutes, Centers, and Offices from across NIH. The goal was to identify research strategies to be able to better measure health disparities, to fill knowledge gaps in the causes of health disparities, and to determine what types of interventions are the most likely to reduce and eventually eliminate health disparities. With input from hundreds of stakeholders, through committees, workshops, and direct public input through a request for information, 30 research strategies emerged. It is hard to convey how daunting yet energizing the visioning process was. First, it was truly awe-inspiring to appreciate the rich diversity and unparalleled passion of those who identify as minority health and health disparity researchers. As the convener, NIMHD facilitated connecting scientific experts who had never interacted before and watched them discover how their research intertwined. For example, researchers focused on early life stage mechanisms were interacting with researchers who were experts on the adult and geriatric life stages; genetic and molecular biologists interacted with population and social scientists; and mental health scientists interacted with cardiovascular disease scientists. These scientific experts and community stakeholders demonstrated determination and personal investment to bridge historical scientific silos, muck through field-specific scientific lingo, and defy self-promoting priorities to advance strategies that can provide universally applicable research findings.

In January 2019, 30 cross-cutting strategies were announced through the AJPH supplement. Several themes arose across the 30 strategies. Here are a few:

• Prioritizing the crucial role that upstream social determinants, as well as racism and other forms of discrimination, play in shaping health and health disparities
• Using system and transdisciplinary approaches necessary to address the complex, dynamic interactions of multiple multilevel determinants that result in health disparities
• Using a life course perspective that accounts for how the lived experience across human development influences health
• Exploring key common biological systems and pathways operating in many diseases and conditions that are influenced by social, environmental, and cultural factors
• Examining the role that the health care system can play in addressing or exacerbating health disparities

My personal request is that all minority health and health disparities researchers take a few moments each month to ponder the strategies and envision how you personally can put them into action in your own research. At NIMHD, we continue to be deeply grateful for all those who took part in the visioning process, because we know the effort it required to bring the supplement to completion. But we are even more grateful for the talented, inspiring researchers who are committed to make the NIMHD vision—an America in which all populations will have an equal opportunity to live long, healthy, and productive lives—a reality.

By David E. Marion, Ph.D.
Licensed Professional Counselor, and Marriage and Family Therapist
Grand Basileus
Omega Psi Phi Fraternity, Inc.

Growing up, in my community, it was frowned upon to ask for help outside of your family. You were forbidden to talk to non-family members about your feelings and especially forbidden to talk about what was going on in your house. There was the inaccurate perception that counseling was for “White folks.” If you needed counseling or medication, that meant to the world you were “crazy,” a layman’s term incorrectly used to label many mental health conditions and challenges. In all my years of counseling, I have never seen the term “crazy” in any diagnostic manual.

It is unfortunate for someone to know they need help and not seek it. As a licensed professional counselor, what I have seen are individuals who became overwhelmed by life. I have seen those who were tired of hurting. They had tried everything they knew and been unable to find peace. They couldn’t move on from their past. They couldn’t forgive themselves. They didn’t seem to be able to stop making the same choices repeatedly, expecting different results. Counseling was their last resort. They somehow found the courage to come and felt healing and peace when they found they were not “crazy.”

I have provided counseling to many individuals and their families, and I have seen firsthand that African Americans are cautious about seeking mental health services. In the African American community, we seek advice from lawyers, accountants, pastors, and others. We talk at length with friends and family. Why not talk to a seasoned, licensed professional counselor about the difficulties of living life on life’s terms? Many African Americans have found religion to be a great source of peace for them. I have found peace as well when I go to church or when I pray. Counseling, I have found, can also be a spiritual experience if it is helpful to the individual and/or family.

I love it when African Americans come to treatment to see “Dr. Marion” and discover, with sighs of relief, that I am African American. It is gratifying to make this initial step much easier. Counseling is not advising. In counseling, one should feel they have the undivided attention of the counselor; that they are heard and believed; and that what they say will be held in confidence unless they are a threat to themselves or others. We might all benefit from this type of interaction.

One of the most memorable counseling sessions I have ever conducted was with a woman who had been sexually assaulted almost two decades earlier. She shared with me, “You are my last resort,” and talked the entire hour-long session. At the end of the session, she said, “That was the best counseling session I have ever been in.” I assessed what I had done so well, only to realize that I had said no profound or prophetic words but had allowed the process to unfold. That is counseling at its best.

Omega Psi Phi Fraternity, Inc. (OPPF) promotes the importance of seeking help for mental health problems through our joint program with the National Institute on Minority Health and Health Disparities (NIMHD), called Brother, You’re on My Mind (BYOMM). In 2014, OPPF met with NIMHD staff to see if we could form a partnership around mental health, targeting African American families and African American men specifically. The goal was to reduce the stigma attached to mental illness and to get help once diagnosed.

Out of that meeting came the BYOMM initiative. Today, the 750 OPPF chapters in the U.S. and abroad are directed to bring mental health experts into their meetings and to community events to discuss the signs and symptoms of mental illness and where to get help. Members within our organization are continuously reflecting on how the program is giving them a way to open up.

Let National Minority Mental Health Awareness Month serve as a reminder that mental health challenges are real. Through BYOMM, OPPF is committed to help eradicate the stigma of mental health challenges and to encourage our people to seek professional help/counseling.

By Natasha Williams, Ph.D., J.D., LL.M., M.P.H.
Former NIMHD Legislative Liaison
National Institute on Minority Health and Health Disparities

Over the last 20 years, the diagnosis and treatment of disease has advanced at breakneck speeds. Currently, we have technologies that have revolutionized the practice of medicine, such as telemedicine, precision medicine, Big Data, and medical artificial intelligence (AI). These technologies, especially AI, promise to improve the quality of patient care, lower health care costs, and better patient treatment outcomes. However, the impact of AI on minority health and health disparities has been largely understudied.

What is AI? The definition of AI is broad and varied and has many subareas. However, the common theme is the ability to “automate or replicate intelligent behavior.”¹ Machine learning, which is a subcategory of AI, is the ability of computers to teach themselves and create their own programming. Deep learning, another AI technique, mimics the human brain by creating an artificial neuronal network. Natural language processing (NLP), which was applied by the National Institute on Minority Health and Health Disparities (NIMHD)–funded researchers at the Medical University of South Carolina (MUSC) and is discussed later in the post, helps computers interpret human language. These methods recognize patterns in the data. Since AI is fueled by data, it is imperative that the data be of good quality, inclusive, and free from bias.² If we fail to ensure these three principles, we could exacerbate health disparities.

AI systems digest large amounts of data from many sources, including but not limited to medical records, medical imaging, and clinical research data. Data bias can occur at multiple levels, from the selection of the data itself to the person who is curating the data. Data bias is introduced through programmer values and perceptions.³ The potential for bias is perpetuated by the lack of women and racial and ethnic minorities in the AI field because their ideas, perceptions, and values are not represented in these AI systems.⁴ Equally importantly, bias occurs when certain populations, such as racial and ethnic minority, rural, and socioeconomically disadvantaged populations, are missing from the data.⁵ These populations disproportionately have adverse health outcomes compared with the general population. AI may be a tool to decrease health disparities and improve minority health; however, these populations must be adequately represented in the data. In addition, diversity of the AI technology workforce is essential. The lack of diversity in the field further promotes bias.

The phrase “garbage in, garbage out” describes the vulnerability of AI data. If the data digested by the AI system is flawed, its predictive power to identify disease and treatment options is equally flawed. Therefore, if health disparity populations are not adequately represented in the data, the promise of AI for these populations is not achievable. Furthermore, AI may create a greater divide between those populations whose data are included and those whose are not.

MUSC, an NIMHD grantee, is utilizing artificial intelligence to address social isolation. According to MUSC researchers, social isolation and other social determinants of health are not always in electronic health record (EHR) coded data but are embedded in the clinical notes. By training NLP software to c omb through thousands of clinical notes, looking for references to social isolation, the team identified socially isolated patients with 90% accuracy. The researchers hope to use machine learning to identify clinical and other traits to help them spot socially isolated patients. If you would like to read more about the MUSC research, please click the following link: https://www.eurekalert.org/pub_releases/2019-05/muos-iho051619.php.

Recognizing the need to explore new technologies such as artificial intelligence and natural language processing on EHR platforms, NIMHD issued a funding opportunity announcement (FOA), “Leveraging Health Information Technology (Health IT) to Address Minority Health and Health Disparities.” The FOA supports research that examines how health information technology reduces disparities and improves health outcomes for minority health and health disparity populations. For more information, please click the following link: https://grants.nih.gov/grants/guide/pa-files/PAR-19-093.html.

References

¹ Executive Office of the President, National Science and Technology Council, Committee on Technology. (2016). Preparing for the Future of Artificial Intelligence. Accessed June 21, 2019.

² MITRE Corporation. (2017). Artificial Intelligence for Health and Health Care.

³ O’Neil, C. (2016). Weapons of Math Destruction: How big data increases inequity and threatens democracy. Crown Random House.

⁴ Campolo, A., Sanfilippo, M., Whittaker, M., Crawford, K., Selbst, A., & Barocas, S. (2017). AI Now 2017 Report. Accessed June 21, 2019.

⁵ Zhang, X. Pérez-Stable, E. J., Bourne, P. E., Peprah, E. Duru, O. K., Breen, N., . . . Denny, J. (2017). Big data science: Opportunities and challenges to address minority health and health disparities in the 21st century. Ethnicity & Disease, 27(2), 95-106.

By Brian Mustanski, Ph.D.
Director, Institute for Sexual and Gender Minority Health and Wellbeing
Co-Director, Third Coast Center for AIDS Research
Co-Director, Center for Prevention Implementation Methodology
Professor, Department of Medical Social Sciences
Northwestern University
Member, National Advisory Council on Minority Health and Health Disparities

In June 1969, the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community led historic riots against discriminatory police raids of the Stonewall Inn, a gay bar in Greenwich Village. The Stonewall riots galvanized the LGBTQ community to come together in a nationwide movement in pursuit of equality.

Growing up as a young gay man in Minnesota, I had no knowledge of Stonewall. With the Internet still in its infancy, there were limited resources to learn about the LGBTQ community. I resorted to secretly reading my high school encyclopedia’s entry on “homosexuality,” which that edition still described as a psychiatric disorder. Media coverage of homosexuality was dominated by the emerging AIDS crisis. I often heard people say, “AIDS is God’s punishment.” With no access to alternative information, it was hard to reject these messages.

Years later, I began pursuing a career in science. My undergraduate faculty mentor warned me not to “come out,” as it could hurt my chances of graduate admission. Evidence is just emerging on how sexual and gender minority (SGM) people experience structural and interpersonal barriers to STEM careers.¹

In graduate school, I was heavily impacted by a report showing that the majority of SGM teens came out online before they did in the “real world.”² This information emerged alongside evidence of alarmingly high HIV prevalence among young gay and bisexual men.³ It was then that I realized that the Internet might be the only way to reach this group with resources and education at a critical point: before they may be at risk of HIV.

e-Health approaches to HIV prevention have continued to be a major focus of my research—particularly with young gay and bisexual men, among whom HIV diagnoses continue to increase.⁴ In 2018, my team published the first study to show significant effects of an e-Health HIV prevention program on a biomedical outcome (sexually transmitted infections),⁵ and we’re studying implementation of the program nationally.⁶ With support from NIMHD, my team is studying a package of developmentally adapted e-Health HIV prevention programs for teenage gay/bisexual boys.⁶ Both projects are simultaneously studying implementation and effectiveness to quickly move evidence into practice.⁷

HIV research on gay/bisexual men represents the majority of NIH funding for SGM health.⁸ But research on the entire SGM community is critical if we are going to remediate health disparities. For example, despite being at increased risk, lesbian and bisexual women are less likely to receive cancer screenings.⁹ Transgender people are more likely to be uninsured, experience rampant discrimination in health care settings, and delay care as a result of that stigma.¹⁰

These aren’t just disturbing statistics—they are devastating realities. At the root of this inequity is the same discrimination that the Stonewall activists rioted against 50 years ago. We are only beginning to uncover how prejudice and discrimination “get under the skin,”¹¹ with toxic effects on SGM health.

That’s not to say we haven’t seen progress. SGM representation in STEM disciplines is becoming more of a priority. My academic home, Northwestern University, appointed me as director of the first university wide institute focused exclusively on SGM health and well-being (ISGMH). In 2016, through the leadership of NIMHD Director Dr. Pérez-Stable, the National Institutes of Health formally recognized our community as a health disparity population for research purposes, opening up new doors for research funding.

But movement often feels like two steps forward and one step back. SGM-focused data collection, which is critical to understanding the health needs of our community, may be discontinued from federal surveys. Our online outreach is increasingly met with hateful messages (e.g., “You deserve extermination”) that we have never seen at this frequency before.

The Healthy People 2020 report ended on a powerful conclusion—that “understanding LGBT health starts with understanding the history of oppression and discrimination that these communities have faced.” This Pride Month, 50 years after Stonewall, we’ll reflect on that history and celebrate our resilience. We’ll also continue to push forward and commit to continuing to advance SGM health equity.

References

¹ Freeman, J. (2018). LGBTQ scientists are still left out. Nature, 559(7712), 27–28. doi:10.1038/d41586-018-05587-y.
² Kryzan, C., Walsh, J., !OutProud!, The National Coalition for Gay, Lesbian, Bisexual, and Transgender Youth, & Oasis Magazine. (1998). !OutProud!/Oasis Internet Survey of Queer and Questioning Youth, August to October 1997.
³ Valleroy, L. A., MacKellar, D. A., Karon, J. M., Rosen, D. H., McFarland, W., Shehan, D. A., . . . Janssen, R. S. (2000). HIV prevalence and associated risks in young men who have sex with men. Young Men’s Survey Study Group. JAMA, 284(2), 198–204. doi:10.1001/jama.284.2.198.
⁴ Centers for Disease Control and Prevention. (2018). Estimated HIV incidence and prevalence in the United States, 2010-2015. HIV Surveillance Supplemental Report, 23(No. 1).
⁵ Mustanski, B., Parsons, J. T., Sullivan, P. S., Madkins, K., Rosenberg, E., & Swann, G. (2018). Biomedical and behavioral outcomes of Keep It Up!: An eHealth HIV prevention program RCT. American Journal of Preventive Medicine, 55(2), 151–158. doi:10.1016/j.amepre.2018.04.026.
⁶ Institute for Sexual and Gender Minority Health and Wellbeing (ISGMH). (n.d.). Keep It Up!
⁷ Curran, G. M., Bauer, M., Mittman, B., Pyne, J. M., & Stetler, C. (2012). Effectiveness-implementation hybrid designs: Combining elements of clinical effectiveness and implementation research to enhance public health impact. Medical Care, 50(3), 217–226. doi:10.1097/MLR.0b013e3182408812.
⁸ National Institutes of Health. (2018). Sexual & gender minority research portfolio analysis (FY 2016).
⁹ American Cancer Society. Cancer facts for lesbians and bisexual women. (2018).
¹⁰ Centers for Disease Control and Prevention. (2018). Patient-centered care for transgender people: Recommended practices for health care settings.
¹¹ Hatzenbuehler, M. L. (2009). How does sexual minority stigma “get under the skin”? A psychological mediation framework. Psychological Bulletin, 135(5), 707–730. doi:10.1037/a0016441.

The Office of Research on Women’s Health (ORWH), on behalf of NIH, led the development and publication of The Trans-NIH Strategic Plan for Women’s Health Research, outlining NIH’s goals for advancing science for the health of women over the next 5 years. One of three guiding principles of the Strategic Plan posits that the influences on the health of women include—in addition to sex and age—race, ethnicity, socioeconomic status, education, geographic location, disability status, and other factors. Rigorous scientific research that accounts for these influences can help us understand and address the health concerns of all populations of women, particularly women from minority populations that bear a disproportionate burden of illness.

A cursory glance at maternal morbidity and mortality statistics, for example, confirms unequivocally how health disparities between racial and ethnic groups abound in the United States. Black women are three to four times more likely to die from pregnancy-related causes than White women.¹ More than twice as many African American mothers receive no prenatal care or prenatal care only late in their pregnancies as White mothers.² Although maternal mortality is on the rise for all demographic groups in this country, Black women have experienced the fastest rate of increase, up to 12 times faster than the rate for White women in some areas.³ Maternal mortality rates are also elevated among Native Americans, Alaska Natives, and some Asian and Hispanic subgroups in certain regions of the United States.^4,5 Black women have the highest rates of 22 of the 25 indicators of severe maternal morbidity established by the Centers for Disease Control and Prevention⁵ and more than twice the risk of severe maternal morbidity of White women.⁴ Black women have higher rates of preeclampsia than other racial groups, and pregnant women in general with new-onset hypertension are more likely to die of cardiovascular disease later in life.⁶ In New York City, Black and Hispanic women are more likely than White women to deliver in hospitals with higher rates of severe maternal morbidity.^5,7,8Nationwide, racial and ethnic trends in maternal morbidity and mortality as they relate to site of delivery are similar to those in New York City.⁹

ORWH, along with other NIH Institutes and Centers, addresses these and other concerns with the following policies, programs, and models supporting biomedical research with the potential to reduce health disparities:

• The NIH Policy and Guidelines on the Inclusion of Women and Minorities as Subjects in Clinical Research directs researchers to consider, analyze, and report sex, gender, racial, and ethnic differences when working with population data or characterizing intervention effects in Phase III clinical trials.
• The 21st Century Cures Act expanded the NIH Inclusion Policies by requiring NIH-supported clinical research to include individuals of all ages. A Workshop Summary explains the rationale behind this policy expansion.
• Another provision of the 21st Century Cures Act requires that NIH-supported researchers report results to ClinicalTrials.gov. This database archives information on publicly and privately funded studies and makes race-, ethnicity-, sex-, and age-specific data more accessible.
• ORWH offers administrative supplements to support Research on the Heath of Women of Understudied, Underrepresented, and Underreported (U3) Populations. Through these supplements, ORWH supports studies focused on the effect of sex and gender influences and how they intersect with social determinants like race, ethnicity, socioeconomic status, and education.
• Through the U3 program, ORWH recently hosted webinars on “Improving the Health and Well-Being of Young Transgender Women: Intersections of Research, Policy, and Practice” with Nadia Dowshen, M.D., on December 6, 2018, and on “Female Genital Mutilation and Cutting: Challenges, Research Gaps, and Opportunities in a Hidden Population” with Crista Johnson-Agbakwu, M.D., on February 20, 2019. Future seminars will address other minority health issues.
• ORWH maintains the Women of Color Health Information Collection, which presents data connecting the health status of women of color to race, ethnicity, culture, socioeconomic background, and geographic location.
• The strategic plan articulates a multidimensional framework (Figure 1) representing the multiple biological, social, environmental, and other factors that influence women’s health over the course of their lives. Many of these factors coincide with population demographics and underlie our nation’s health disparities.

Through these programs and models, ORWH hopes to guide biomedical research and clinical practice to reduce health disparities and improve care for minority populations. Future longitudinal studies could, for instance, follow women with preeclampsia in the years and decades after their pregnancies to determine the risk of later-life hypertension and other cardiovascular diseases and to test screening practices, preventative interventions, and treatments. In such studies and analogous research in all areas of human health, consideration of race, ethnicity, and the other factors identified in the multidimensional framework would address disparities; inform individualized, evidence-based treatments; guide implementation science; and improve the health of all women.

Figure 1. This multidimensional framework represents the intersection of multiple factors over the course of a woman’s life.

References

1. Mann et al. 2018. Engl. J. Med. 379: 1689-1691.
2. Child Trends. “Late or No Prenatal Care: Indicators of Child and Youth Well-Being.”
3. Howell et al. 2017. Perinatol. 41: 266-272.
4. Howell et al. 2018. Obstet. Gynecol. Neonatal Nurs. 47: 275-289.
5. 2018. Clin. Obstet. Gynecol. 61: 387-399.
6. Ghosh et al. 2014. Dis. 24: 283-289.
7. Howell et al. 2016. J. Obstet. Gynecol. 215: 143-152.
8. Howell et al. 2017. Gynecol. 129: 285-294.
9. 2019. Women’s Health in Focus at NIH 2: 2-6.

By Marshall H. Chin, M.D., M.P.H.
Richard Parrillo Family Professor of Healthcare Ethics in the Department of Medicine,
University of Chicago
Member, National Advisory Council on Minority Health and Health Disparities

When I was a kid, every Saturday my parents would pack my older sister, younger brother, and me into the family station wagon, and we’d drive 40 minutes on Route 2 East from Boston’s western suburbs into Chinatown. There we gathered with aunts, uncles, and cousins in the home of my grandparents, immigrants from Toisan in southern China. The conversations were loud, the play was very lively, and the wonderful aromas of roast chicken, fried noodles, and sizzling stir-fried vegetables filled the air.

An impressionable young child, I watched intently as my uncles played poker, cigar smoke wafting into the nighttime air. They taught me how to play poker at the ripe old age of 8, and I filled in when one had to take a break for a hand or two. Most of my paternal uncles worked in the laundries. My mother’s side was noodles. My uncles were bright men, but the bamboo ceiling—basically, exclusion from good jobs—limited their opportunities. “I don’t have a Chinaman’s chance,” they’d say as they folded a losing hand of cards.¹

Running around Chinatown with my cousins, I saw that my uncles weren’t the only ones whose opportunities were limited. Housing was crowded, and the streets were dirty and smelled of garbage. Years later, when I worked part-time at the Federally Qualified Health Center in Boston’s Chinatown, I cared for many non–English speaking immigrants with limited education. They faced uphill battles as they dealt with their chronic health conditions, paid medical bills without health insurance, and attempted to advance in society.

Entering Asian American and Pacific Islander Heritage Month, a cutting-edge issue is addressing social determinants of health, which are especially critical among diverse Asian American ethnic groups that vary in education, income, and acculturation. For example, some Southeast Asian immigrants were forced to leave their countries because of the Vietnam War and have suffered piercing intergenerational trauma, socioeconomic deprivation as refugees, and major health disparities. Health care organizations are exploring ways to screen patients for social needs, refer them to community partners in fields such as housing and food security, and integrate their medical and social care.

Federally Qualified Health Centers are pioneers. The Association of Asian Pacific Community Health Organizations (AAPCHO), the National Association of Community Health Centers (NACHC), and the Oregon Primary Care Association (OPCA) have created the Protocol for Responding to and Assessing Patient Assets, Risks, and Experiences (PRAPARE) tool to screen for needs such as housing, employment, transportation, safety, and social support.² AAPCHO, NACHC, and colleagues at the University of Chicago are currently investigating ways to score this screening instrument to identify high-risk patients for intervention, with support from the National Institute of Diabetes and Digestive and Kidney Diseases–funded Chicago Center for Diabetes Translation Research. Under global payment mechanisms and alternative payment models such as Accountable Care Organizations (ACOs), health systems have strong incentives to improve care for their most costly resource-intensive patients, who often have significant social needs.

Yet a deeper issue beyond caring for individual patients is inherent within social determinants of health: addressing the underlying structural drivers of inequities that faced my uncles and the many low-income Asian American immigrants I saw at the South Cove Community Health Center. We must have free, frank, and fearless discussions about structural racism and social privilege, the systems that insidiously drive many health disparities.³ Inequities in fields that ultimately affect health—such as employment, housing, education, and the criminal justice system—are the result not only of individuals’ implicit biases but also of concrete laws, regulations, and business decisions that have marginalized the poor and racial/ethnic minorities. These structural determinants have created an unequal playing field that contributes to health disparities. Solutions include intersectoral partnerships—collaborations of health and non-health sectors, drawing upon community assets—and recognizing that eliminating health disparities is a moral and social justice issue.⁴ Inspirational grantees in our Merck Foundation Bridging the Gap: Reducing Disparities in Diabetes Care program are transforming diabetes care and engaging in innovative community partnerships around challenges such as food security and medical/legal services for immigrants.⁵

Ultimately, our nation will need to align key stakeholders to achieve health equity. In the Robert Wood Johnson Foundation’s Advancing Health Equity: Leading Care, Payment, and Systems Transformation program, state Medicaid agencies, Medicaid managed care organizations, health care organizations and systems, patients, and consumers will develop and evaluate innovative care transformation and payment efforts to achieve health equity.⁶ Research addressing individual patient and societal factors will be critical for achieving health equity⁷ and for blasting through the bamboo ceiling and other structural and exclusionary barriers that limit the health of Asian Americans.

References

¹ Liu E. A Chinaman’s Chance: One Family’s Journey and the Chinese American Dream. New York: PublicAffairs, 2014.
² Protocol for Responding to and Assessing Patient Assets, Risks, and Experiences. PRAPARE: Available at: http://www.nachc.org/research-and-data/prapare/. Accessed April 18, 2019.
³ Chin MH, King PT, Jones RG, Jones B, Ameratunga SN, Muramatsu N, Derrett S. Lessons for achieving health equity comparing Aotearoa/New Zealand and the United States. Health Policy 2018; 122:837-853. pii: S0168-8510(18)30131-3. doi: 10.1016/j.healthpol.2018.05.001.
⁴ Chin MH. Movement advocacy, personal relationships, and ending health care disparities. J Nat Med Assoc 2017; 109:33-35.
⁵ Bridging the Gap in Diabetes Care: Reducing Disparities in Diabetes Care. http://bridgingthegapdiabetes.org. Accessed April 18, 2019.
⁶ Advancing Health Equity: Leading Care, Payment, and Systems Transformation. http://www.solvingdisparities.org. Accessed April 18, 2019.
⁷ National Institute on Minority Health and Health Disparities Research Framework. https://www.nimhd.nih.gov/about/overview/research-framework/nimhd-framework.html. Accessed April 18, 2019.