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Category: Diversity, Inclusion, & Accessibility

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Headshot of Michael E. Bird
Photo credit: Leadership Academy for the Public’s Health

In an effort to remain accountable to communities who have been negatively impacted by past and present medical injustices, the staff at Himmelfarb Library is committed to the work of maintaining an anti-discriminatory practice. We will uplift and highlight diverse stories throughout the year, and not shy away from difficult conversations necessary for health sciences education. To help fulfill this mission, today's blog post celebrates the contributions of Native American Michael E. Bird to the field of public health.

Michael E. Bird, a Santo-Domingo/Kewa Pueblo Indian from New Mexico, has more than 25 years of experience working in public health and with Native American populations. After growing up in New Mexico, California, and Utah, Bird earned his bachelor’s degree in anthropology and a master of social work (MSW) degree from the University of Utah (Berkeley Public Health, 2020). Bird worked as a medical social worker prior to completing his master of public health at the University of California’s Berkeley School of Public Health in 1983 (Berkeley Public Health, 2020).  

Cover of the American Journal of Public Health, Volume 104, No. S3 (June 2014).

Bird was the first Native American to serve on the National Policy Council of AARP, as well as the first Native American and social worker to become President of the American Public Health Association (APHA) (University of Utah College of Social & Behavioral Science (UT CSBS), n.d.). During his time as APHA President, the APHA’s journal, the American Journal of Public Health, published a supplemental issue focused on Native public health - a historic first for the journal.

Bird has also served as the executive director of the National Native American AIDS Prevention Center, and has worked with the Indian Health Service (IHS) for 20 years (UT CSBS, n.d.). Additionally, he has served as President of the New Mexico Public Health Association and has been a board member of numerous organizations including the Kewa Pueblo Health Corporation, and the American Indian Graduate Center among others (UT CSBS, n.d.).

Bird became aware of the public health issues facing Native Americans while working at the Santa Fe Indian hospital. He spoke of this experience in an interview with Berkeley Public Health in which he explained “ [I] wasn’t able to have the kind of impact I wanted to have, and that no matter how good I was, or what I did, that it was sort of a revolving door for patients. … That lack of opportunities for Native people was contributing to their health conditions.” (Berkeley Public Health, 2020). Bird went on to explain that working for the Indian Health Service made him even more aware of the constraints of working with an underfunded bureaucratic system that “didn’t provide enough support and leadership, and was not engaging tribal communities in a respectful, collaborative manner” (Berkeley Public Health, 2020).

In July 2020, Bird spoke about the disproportionate effect of COVID-19 on Native Americans during this same interview with Berkeley Public Health. Conducted early on during the COVID-19 pandemic, Bird stated that in New Mexico “Native Americans make up 11 percent of the general population but they make up 50 percent of the COVID-19 cases” (Berkeley Public Health, 2020). Bird explained that the Pueblo tribes and Navajo Nation, both significantly impacted by the pandemic, had high poverty rates and marginalized populations with people living without “adequate housing, water, or electricity, and COVID just compounds all these conditions. It’s not just obesity, it’s what created obesity” (Berkeley Public Health, 2020). 

In the July 2021 issue of Nation’s Health, Bird outlined some actions that can be taken to improve health inequities among Native American populations. “First, we need to ask ourselves how we got here, and what we’re willing to do to move in an ethical and humane direction” (Bird, 2021). He further explains that committing to “involve communities whose voices have been largely absent from the rooms where power and policies are created, which determine our future” is essential if we want to move forward (Bird, 2021).

In October 2020, Bird presented a session titled “Owning Historical Trauma: A Precursor to Strengthening Public Health” at the APHA Virtual Annual Meeting. Watch the following video to hear Bird’s thoughts on this issue:

“I think the other thing is that one of the polite terms that’s used is “comorbidities” for communities. It’s a polite way of really not addressing the real issue. The real issue is historical trauma, the real issue is poverty, the real issue is racism. … this is important because people don’t know the history of this country, particularly when it comes to native populations. People don’t understand the context, the nature of disparities, the nature of poverty, racism, and how history is tied to all of that.” ~ Michael E. Bird

(American Public Health Association, 2020).

Interested in learning more about Native American Health? Check out the Native Health Database. Take a look at our blog post about this resource to learn more!

References:

American Public Health Association (APHA). (2020, October 24). Michael Bird, MPH, MSW - National Consultant, National Policy Council for AARP . https://www.youtube.com/watch?v=OmRgzfKKe9M

Berkeley Public Health. (July 23, 2020). How can American get Native health right? A conversation with Berkeley Public Health alumnus Michael E. Bird. https://publichealth.berkeley.edu/news-media/school-news/how-can-america-get-native-health-right/

Bird, M.E. (2021). Then & now: 20 years later, has the American Indian and Alaska Native health improved? Nation’s Health, 51(1), 8.

University of Utah College of Social & Behavioral Science (UT CSBS). (n.d.). Michael E. Bird. CSBS Alumni, Emeriti, and Friends Spotlight. https://csbs.utah.edu/alumni-spotlights/m-bird.php

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October is Breast Cancer Awareness Month, a time when we show support for breast cancer patients and raise awareness of the disease and the importance of early detection. 1 in 8 women will receive a breast cancer diagnosis sometime in their lifetime. Though tremendous progress has been made in early detection and treatment since the 1980s, 43,000 women still die annually of breast cancer and there are significant disparities in who is more likely to survive.

“In the United States, age-adjusted breast-cancer mortality is about 40% higher among Black women than among non-Hispanic White women (27.7 vs. 20.0 deaths per 100,000 women from 2014 through 2018), despite a lower incidence among Black women (125.8 vs. 139.2 cases per 100,000 women)” according to a recently published Perspective article in the New England Journal of Medicine.1 The article asserts that Black women have benefited less from mammography than White women and that social determinants of health play a role. The higher incidence of hormone receptor (HR) negative cancer subtypes, including triple-negative, in Black women is another factor in survival disparity. These tumors are harder to detect by mammography, more aggressive, and not responsive to hormone therapy, making for a poorer prognosis than the more common HR positive subtypes. The NEJM article calls for making prevention and treatment of triple-negative breast cancer a national priority.

Recently there has been a campaign for alternate methods of early cancer detection for women with dense breasts. Dense breasts can make a mammogram more difficult to read. 38 states now require notification of women who have had a mammogram that indicated high tissue density. 16 states and the District of Columbia now also have expanded insurance coverage for these women, usually allowing an annual mammogram and 3D mammography, MRI, or ultrasound screening. However, most organizations in the US that author breast cancer screening guidelines do not recommend supplemental imaging for women with dense breasts. The National Cancer Institute (NCI) has an FAQ on dense breast tissue, breast cancer risk and screening.

Genetic testing for BRCA gene mutations also has the potential to reduce breast cancer incidence and mortality. 55%–72% of women who inherit a harmful BRCA1 variant and 45%–69% of women who inherit a harmful BRCA2 variant will develop breast cancer by 70–80 years of age.2 Testing is not recommended for the general public. Only those with increased risk for a BRCA mutation should pursue genetic counseling and potential testing. The NCI has a guide on BRCA cancer risk and genetic testing, outlining at-risk populations, benefits and harms of testing, and treatment options for those who have the mutations.

  1. Jatoi I, Sung H, Jemal A. The Emergence of the Racial Disparity in U.S. Breast-Cancer Mortality. N Engl J Med. 2022 Jun 23;386(25):2349-2352. doi: 10.1056/NEJMp2200244. Epub 2022 Jun 18. PMID: 35713541.
  1. Kuchenbaecker KB, Hopper JL, Barnes DR, et al. Risks of Breast, Ovarian, and Contralateral Breast Cancer for BRCA1 and BRCA2 Mutation Carriers. JAMA. 2017 Jun 20;317(23):2402-2416. doi: 10.1001/jama.2017.7112. PMID: 28632866.

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Portrait of Dr. Antonia Novello.
Photo By United States Department of Health and Human Services

Dr. Antonia Novello is a healthcare professional who for many decades focused on improving the health of women, children and those most vulnerable in modern society. 

She was born in Puerto Rico on August 23, 1944 and is the oldest of three children. During her childhood, Dr. Novello suffered from congenital megacolon which impacted her large intestine. Treatment options were available, but due to her family’s financial situation, Dr. Novella was unable to receive surgery to cure the condition until she was eighteen years old. This experience had a lasting impact on her and was one factor that inspired her to pursue a career in health sciences. Dr. Novello earned a multitude of degrees and certificates including a Bachelor of Science and a Doctor of Medicine from the University of Puerto Rico in 1965 and 1970 respectively and a master degree in Public Health from John Hopkins University in 1982.  

After marrying Joseph R. Novello and moving to Michigan, Dr. Antonia Novello completed an internship and residency in pediatrics and a fellowship in pediatrics nephrology. She took an interest in nephrology after a beloved family member died due to complications with their kidneys. Dr. Novello practiced medicine in a private office for two years, but eventually transitioned to work for the National Institutes of Health (NIH) in 1978. Novello focused on health issues related to women, children and marginalized communities during her time at NIH. She was instrumental in the legislation that led to the creation of the national organ transplant registry and she also played a significant role in requiring all cigarette containers be labeled with a health warning. In 1989, President George H.W. Bush selected her as the new United States Surgeon General making her both the first woman and the first Hispanic American to fill the role. 

Novello served as the U.S. Surgeon General from 1990 until 1994 when the Clinton Administration began. During her tenure, Novello continued to advocate for women and children. “In March 1992, she and James S. Todd, executive vice-president of the American Medical Association (AMA), held a news conference at which they denounced the R.J. Reynolds Tobacco Company’s advertisements featuring the cartoon character Joe Camel, because research showed that it appealed to young children.” (Meier et al., 1997, p. 272) Novello was also vocal about the alcohol industry’s marketing practices, particularly the industry’s use of advertisements which showed people skiing, surfing or mountain climbing with alcoholic beverages close by as it suggested people could perform these activities while consuming alcohol. Novello also raised awareness on domestic violence and its impact on women. (Meier et al. 1997)

After 1994, when a new Surgeon General was appointed, Novello continued to work within the healthcare industry until her retirement in the 2010s. Novello currently spends her time between Puerto Rico and Florida and is still an active advocate for the health needs of others. Most recently during the COVID-19 vaccine rollout, Novello spoke with parents and other community members of the importance of vaccination and even participated in local vaccination clinics and programs. And in August of 2021, she and other living former surgeon generals participated in a White House event where they discussed “getting information and access to vaccines to communities of color, who have been the hardest hit during the pandemic.” (Sesin, 2021)

Novello has received recognition for her work as a healthcare provider and public health advocate. Some of the awards she has received over the course of her career include “the Public Health Service Commendation Medal (1983); Congressional Hispanic Caucus Medal (1991); Order of Military Medical Merit Award (1992); and the James Smithson Bicentennial Medal (2002).” (Brandman, 2021) Dr. Antonia Novello’s lengthy career is inspirational for people committed to serving their communities and her legacy of speaking up for women and children will have profound effects for years to come. 

References:

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Photo by Tom Fisk via Pexels.com

The Hispanic community is one of the fastest growing populations in the United States. According to census data, people who identified as Hispanic accounted for approximately half of the total population growth in the country between 2010 and 2020 and around 18.7% or 62.1 million Americans self-identify as Hispanic or Latino. (U.S. Census Bureau, 2021) Despite a significant presence in the country, less than 10% of all healthcare workers are Hispanic. Recent statistics and personal anecdotes suggest that having visible representation of Hispanic American healthcare workers will encourage more Hispanic individuals to pursue a career in the health sciences and allow Hispanic American patients to better connect with their healthcare provider.

On June 14, 2022, the Pew Research Center released a report entitled ‘Hispanic Americans’ Trust in and Engagement with Science.’ The report was based on survey data from nearly 15,000 U.S. adults and examined Hispanic Americans’ perceptions of both health sciences and the science, technology, engineering and mathematics (STEM) field. The authors note that overall “Hispanic adults hold largely trusting views of both medical scientists and scientists to act in the public’s interests. Hispanic adults’ encounters with the health and medical care system are varied, reflecting the diverse nature of the U.S. Hispanic population across characteristics such as nativity, language proficiency, gender, age and education.” (Funk & Lopez, 2022) Many Hispanic Americans have poor or no access to the healthcare field and for those able to regularly visit a healthcare provider, there are barriers to care, such as communication problems, that are present during these visits. The Pew Center report noted “Hispanic adults are less likely than other Americans to have health insurance and to receive preventative medical care.” (Funk & Lopez, 2022) Survey respondents shared many different opinions on the cause of health disparities within the Hispanic American population including working jobs with high health risks, language barriers, poverty and preexisting health conditions. When asked about solutions to address these health disparities many people responded that they believed increasing the visible representation of Hispanic healthcare workers would address these disparities. This sentiment is echoed by current Hispanic healthcare professionals:

Professional organizations such as the National Association of Hispanic Nurses and National Hispanic Medical Association connect Hispanic healthcare workers and develop meaningful communities. On the George Washington University campus, there is a local chapter Latino Medical Student Association. This organization will hold its 50th annual conference on January 27-28 in 2023 at John Hopkins University and the theme for the conference is “Un Futuro Para Todos: Highlighting Latino Innovation, Service, and Leadership in Medicine.” Registration for the conference is currently open and early bird prices are available until November 11th. To learn more about GWU’s Latino Medical Student Association, click here to view their website or email the organization at lmsa.gwsmhs@gmail.com.

Wandy D. Hernandez-Gordon writes in their personal narrative for AMA Journal of Ethics “Health professionals with cultural and language proficiency are critical to successful interventions, including health education, preventative medicine, and treatment. But these interventions are only the start in addressing the higher burdens and challenges that Latinos face in accessing quality health care. It is also critical to dissect and understand the systems and structures that both lead to and exacerbate health inequities.” (Hernandez-Gordon, 2022, p. 335) The Hispanic population in the United States continues to grow and it is important that they are able to access the full benefits of the healthcare system. In order to meet the needs of this diverse population, it’s important that more Hispanic healthcare professionals enter the field, share their experiences with their colleagues and collaborate with one another to offer long-lasting solutions.

References: 

Funk, C., & Lopez M.H. “Hispanic Americans’ Trust in and Engagement with Science.” Pew Research Center, Washington D.C. (June 14, 2022) https://www.pewresearch.org/science/2022/06/14/hispanic-americans-trust-in-and-engagement-with-science/

Hernandez-Gordon, W.D. (2022). Why Community Health Workers’ Roles in Latinx Communities Are Essential. AMA Journal of Ethics, 24(2), E333-339. https://doi.org/10.1001/amajethics.2022.333


United States Census Bureau. (2021). 2020 Census Illuminates Racial and Ethnic Composition of the Country. https://www.census.gov/library/stories/2021/08/improved-race-ethnicity-measures-reveal-united-states-population-much-more-multiracial.html

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In recent years, clinical calculators have faced criticism for their treatment of race and ethnicity. The datasets on which these calculators were based, drawn from cohort studies and other longitudinal trials, are frequently homogeneous populations or of limited diversity. Reports of research methods have often been opaque. The data categories used for race and ethnicity, based on those created by the Office of Management and Budget, are limited and do not reflect the diversity of participants’ identities (see AMA Manual, 11th edition, Chapter 11.12.3). Furthermore, the data behind the calculators reflects existing disparities, which are perpetuated in their continued use (Vyas et al., 2020).

As the medical community confronts how the variable race serves a proxy for systemic racism in these calculations (Davidson et al., 2021), conversations have even risen to more mainstream media (e.g. Should Black People Get Race Adjustments In Kidney Medicine?, Racial bias in widely used hospital algorithm, study finds). As we reckon with the racism and discrimination that has been part of medicine; we advocate for, and work towards, change. 

Time and research is needed to identify predictive variables, develop algorithms, and validate calculators (Hamad et al., 2022 video abstract, Rodriguez et al., 2019, Cardiovascular Risk Assessment [DynaMed]). For ASCVD risk estimation, for instance, we often use the Pooled Cohort Equations (PCE). The 2019 ACC/AHA Guideline on the Primary Prevention of Cardiovascular Disease notes, “The PCE are best validated among non-Hispanic whites and non-Hispanic blacks living in the United States. In other racial/ethnic groups or in some non-US populations, the PCE may overestimate or underestimate risk. Therefore, clinicians may consider the use of another risk prediction tool as an alternative to the PCE if the tool was validated in a population with characteristics similar to those of the evaluated patient” (Arnett et al., 2019, emphasis added). Fortunately, there are alternatives, which are listed in practice guidelines and in DynaMed, and work to develop and validate tools continues, e.g. Weale et al., 2021. 

Over years, we see new calculators developed and guidelines begin to include them. More immediately, we see a statement on Race in Medical Calculators and Risk Estimates describing MDCalc’s efforts to provide additional context and signposting. Going back to ASCVD risk estimation, the ASCVD Risk Estimator+ now notes that “estimates may underestimate the 10-year and lifetime risk for persons from some race/ethnic groups, especially American Indians, some Asian Americans (e.g., of south Asian ancestry), and some Hispanics (e.g., Puerto Ricans), and may overestimate the risk for others, including some Asian Americans (e.g., of east Asian ancestry) and some Hispanics (e.g., Mexican Americans)”. 

We can be advocates for changes. Medical students in a February 2022 informatics session questioned why one particular tool only had Black and White as options for race. (Other calculators offer Black | White | Other; the AMA manual of style notes that “The nonspecific group label "other"... is uninformative and may be considered pejorative" (AMA Manual of Style, Chapter 11.12.3).) Their librarian instructor contacted the tool developer, who responded by adding the option ‘Neither of these’. While the display changes are imperfect, they highlight the importance of continuing the discussion of how race is used in clinical calculators, and the  importance of highlighting where we need to adopt additional tools, develop new tools, reconsider what we are trying to measure, and invite more people to plan and participate in our studies to ensure that we have data that reflects our population. 

Research to improve these calculators continues. We have seen a reevaluation of the use of race as a variable at all in calculations like eGFR. Calculators are being developed and validated using data and variables that reflect more diverse populations. Researchers are being asked to consider how race as a social construct impacts their research questions, whether to use race as a variable, and, if so, what categories are appropriate. In the informatics session, we discuss how practitioners need to consider the data from which the calculators were derived, how that data does (not) reflect their patients, and what alternative tools they might use. Himmelfarb’s point-of-care tools highlight practice guidelines and recommended calculators. Our librarians are here to help you access and navigate these resources.  

For more on this topic, see:

Awareness in Writing and Publishing, for information on collecting and reporting on race and ethnicity in research [Additional Resources - Cultural Competency] 

Critical Data Literacy: Addressing Race as a Variable in a Preclinical Medical Education Session [poster; Research Guide]

Race Correction in the UTI Guidelines - The Curbsiders [podcast]

References

Vyas D. A., Eisenstein L. G., Jones D. S. Hidden in Plain Sight — Reconsidering the Use of Race Correction in Clinical Algorithms. The New England jJournal of medicine. 2020;383(9):874-882. https://doi.org/doi:10.1056/NEJMms2004740

Davidson, K. W., Krist, A. H., Tseng, C.-W., Simon, M., Doubeni, C. A., Kemper, A. R., Kubik, M., Ngo-Metzger, Q., Mills, J., & Borsky, A. (2021). Incorporation of Social Risk in US Preventive Services Task Force Recommendations and Identification of Key Challenges for Primary Care. JAMA. https://doi.org/10.1001/jama.2021.12833

Hamad, R., Glymour, M. M., Calmasini, C., Nguyen, T. T., Walter, S., & Rehkopf, D. H. (2022). Explaining the variance in cardiovascular disease risk factors: A comparison of demographic, socioeconomic, and genetic predictors. Epidemiology (Cambridge, Mass.), 33(1), 25–33. https://doi.org/10.1097/EDE.0000000000001425

Rodriguez, F., Chung, S., Blum, M. R., Coulet, A., Basu, S., & Palaniappan, L. P. (2019). Atherosclerotic cardiovascular disease risk prediction in disaggregated asian and hispanic subgroups using electronic health records. Journal of the American Heart Association, 8(14), e011874. https://doi.org/10.1161/JAHA.118.011874 

Arnett D. K., Blumenthal R. S., Albert M. A., et al. 2019 ACC/AHA Guideline on the Primary Prevention of Cardiovascular Disease: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines [published correction appears in Circulation. 2019 Sep 10;140(11):e649-e650] [published correction appears in Circulation. 2020 Jan 28;141(4):e60] [published correction appears in Circulation. 2020 Apr 21;141(16):e774]. Circulation. 2019;140(11):e596-e646. https://doi.org:/10.1161/CIR.0000000000000678

Weale, M. E., Riveros-Mckay, F., Selzam, S., Seth, P., Moore, R., Tarran, W. A., Gradovich, E., Giner-Delgado, C., Palmer, D., Wells, D., Saffari, A., Sivley, R. M., Lachapelle, A. S., Wand, H., Clarke, S. L., Knowles, J. W., O’Sullivan, J. W., Ashley, E. A., McVean, G., … Donnelly, P. (2021). Validation of an Integrated Risk Tool, Including Polygenic Risk Score, for Atherosclerotic Cardiovascular Disease in Multiple Ethnicities and Ancestries. The American Journal of Cardiology. https://doi.org/10.1016/j.amjcard.2021.02.032

AMA Manual of Style Committee. (2020). Correct and Preferred Usage. In AMA Manual of Style: A Guide for Authors and Editors (11th ed.). Oxford University Press. https://doi.org/10.1093/jama/9780190246556.001.0001

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Photo of three individuals talking. One person is in a power chair, another leans against the wall and the third stands with their cane.
Photo Credit: Disabled and Here Photo Collection

On July 26, 1990, President George H.W. Bush signed the American with Disabilities Act (ADA) into law which provided legal protections for disabled people. To commemorate the signing of this key piece of legislation, July 26th is known as National Disability Independence Day. 

According to ADA.gov, “The Americans with Disabilities Act (ADA) is a federal civil rights law that prohibits discrimination against people with disabilities in everyday activities...The ADA guarantees that people with disabilities have the same opportunities as everyone else to enjoy employment opportunities, purchase goods and services, and participate in state and local government programs.” (U.S. Department of Justice Civil Rights Division, 2022) The ADA defines a person with a disability as someone who:

  • Has a physical or mental impairment that substantially limits one or more major life activities
  • Has a history or record of such an impairment (such as cancer that is in remission), or
  • Is perceived by others as having such an impairment (such as a person who has scars from a severe burn). (U.S. Department of Justice Civil Rights Division, 2022)
An image of a person placing a hearing aid into their ear.
Photo Credit: Disabled and Here Photo Collection

The ADA is split into five subsections which details the protections disabled people are given. While the ADA prevents discrimination against disabled people due to their disabilities, many disability activists remain vocal about the inequalities disabled people continue to face. For example, during the COVID-19 pandemic, many disability rights activists spoke up on how COVID safety measures were key to keeping disabled and severely ill people safe. When these measures were lifted  many disabled people were unable to fully participate in society:

“Disability rights and inclusion activist Imani Barbarin started the #MyDisabledLifeIsWorthy hashtag…in response to [CDC Director Dr. Rochelle] Walensky’s Jan. 7 appearance on Good Morning America, in which the presence of underlying conditions in those who have died from COVID-19 was framed as ‘encouraging news’...That Walensky’s remarks angered so many in the disability community–who took to Twitter to speak out about feeling unprotected and unvalued at a time when opposition to mask-wearing and vaccine mandates remains considerable, and accessibility is compromised–is emblematic of nearly two years of ongoing frustration with a society that is rushing to return to business as usual while leaving high-risk individuals isolated and vulnerable.”

(Pagano, 2022)

Disability rights activists point out that accessibility features allow disabled people to engage with society and also benefits able bodied people. As disability rights activist Kings Floyd notes in their TEDx talk Lessons in Making Aging Accessible, From a Millenial: “If we cannot support the community in which we live everyday, to be able to connect, to be able to socialize, to be able to be accessible, we are not planning for our future and we are not planning for our success.” (Floyd, 2019)

The movement for equal rights for disabled people has a long history and is still active today. A Disability History of the United States (available through the ConsortiumLoan Service) provides a detailed account of the disability rights movement and key figures. Other important books that cover this topic include Twenty-Two Cents an Hour: Disability Rights and the Fight to End Subminimum Wages, Accessible America: A History of Disability and Design and Disability Rights, Benefits, and Support Services Sourcebook. NPR’s Independence Day For Americans with Disabilities focuses on the fight for the Americans with Disabilities Act. Judith Heumann’s TED talk Our Fight for Disability Rights–and Why We’re Not Done Yet is a personal narrative about the fight for accessible facilities and job opportunities. Lastly there is the Disability Visibility Project which is an online storytelling website that publishes work by disabled creators.

An image of a person dressed in all black standing with a cane in front of two large glass windows.
Photo Credit: Disabled and Here Photo Collection

References:

Floyd, K. (2019, December 13). Lessons in Making Aging Accessible, From a Millenial. YouTube.  https://www.youtube.com/watch?v=DsWPbi-XTK4&t=1s

Pagano, J. (2022, January 23). #MyDisabledLifeIsWorthy highlights disability community’s pandemic frustrations: ‘We are seen as collateral damage’. Yahoo!News. 

U.S. Department of Justice Civil Rights Division. (2022). Introduction to the Americans with Disabilities Act. https://beta.ada.gov/topics/intro-to-ada/

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Image of BIPOC person conducting an experiment.
Photo by RF._.studio: https://www.pexels.com/photo/teenage-student-conducting-research-in-chemical-laboratory-3825412/

A recent report compiled by Ryan Beardsley (Senior Consultant) and Gali Halevi (Director) at the Insitute for Scientific Information, explored the diversity of authorship of STEM publications and found that the ethnicity of authors in the United States has not changed significantly during the past 10 years.

It is widely acknowledged that diversity encourages innovation, improved decision-making, and improved outcomes. Reasons for the continued lack of diversity within higher education mentioned in the report included “insufficient time, funding and knowledge of best practices” (Beardsley & Halevi, 2022). 

The report aimed to accomplish the following: 

  • Identify the ethnicity of authors of research articles published in STEM disciplines
  • Identify the gaps in ethnic diversity within the published research
  • Discover participation and inclusivity trends of authorship
  • Discover and identify changes in levels of authorship among underrepresented minorities

The report tracked the ethnicity of authorship using bibliographic authors’ last names as retrieved from articles indexed in Web of Science. Articles selected for inclusion were limited to publications from U.S. institutions authored by U.S. authors. Articles published by organizations outside of the U.S. and/or with international authors were excluded from this analysis. The authors’ last names were extracted from the bibliographic data and compared to U.S. Census data. 

Since publishers don’t typically gather ethnicity or demographic data about authors, a system needed to be developed to estimate author ethnicity. Author names were not assigned to a single ethnic group. Author names were “assigned the fractional probability of the respective ethnicities” based upon the frequency of the last name being self-identified within a specific ethnic group in U.S. Census data (Beardsley & Halevi, 2022). For example, if the last name appears in Census data to have self-identified as “90% White Only, 5% Black Only, 2% Asian/Pacific Islands Only, and 3% Two or More Races,” the last name was assigned the same percentage in those same ethnicity categories (Beardsley & Halevi, 2022). 

The report selected four areas of research within STEM on which to focus: biochemistry, mathematics, medical research, and computer science. The table below displays the authorship findings for biochemistry and medical research. 

2020 Authorship Data
BiochemistryMedical Research
White Only41.90%42.00%
Asian/Pacific Island Only24.00%23.00%
Black Only5.50%5.50%
Hispanic5.20%5.10%
Native American /Alaska Native0.33%0.32%

In the discipline of biochemistry, Asian/Pacific Island Only authorship was higher than the representation in the general population. At the same time, Hispanic authorship was significantly underrepresented compared to the representation in the general population. 

In medical research, Asian/Pacific Island Only authorship (23% in 2020) was significantly higher than the representation within the general population, while all other ethnicities were underrepresented compared to the general population. White Only authorship continues to make up the largest percentage of published research but has decreased from 45% in 2010 to 42% in 2020. 

The conclusions of this report found that there has been very little change in the overall rate of authorship within specific ethnic groups over the past ten years, despite an “increasing awareness of the importance of improved diversity” (Beardsley & Halevi, 2022). The authors recommend increased mentorship, development, and education efforts in this area. They also stated a need for increased collaboration between universities, funding agencies, and publishers. For those interested in learning more, download the full report.

Are you interested in learning more about diversity in STEM? Here are some articles for further reading on this topic:

References:

Beardsley, R., & Halevi, G. (2022). Insights: Ethnic diversity in STEM in the United States.

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Photo by Markus Spiske

In the United States, June is designated as Pride Month where LGBTQIA+ individuals, families, organizations and their allies commemorate the 1969 Stonewall Riots, recognize the struggle for marriage equality, bring awareness to discriminatory legislation and celebrate the range of gender identities and sexualities. Washington D.C. hosts a large Pride parade and festival every year and this year’s event, which occurred June 11th and 12th, was projected to have over half a million people in attendance. If you missed the parade and festival, there are still organizations, resources and events, including another local Pride festival, that will allow you to connect with members of D.C.’s LGBTQIA+ community. 

  • 2022 Arlington Pride Festival- June 25, 2022 marks the first year that Arlington, Virginia will host its own Pride celebration. The event will be held at Gateway Park in the Rosslyn neighborhood, which is metro-accessible. The festival starts at noon and will end at 7 pm. There will be performances, vendors, food and other entertainment and it is free to attend. Make the trip across the Potomac on the 25th and come celebrate this year’s Pride month! 
  • The DC Center- Located on 14th Street NW, the DC Center for the LGBT Community is a local community center who “educates, empowers, celebrates, and connects the lesbian, gay, bisexual and transgender communities.” The DC Center hosts many social and community events including Reel Affirmations, an international LGBTQ film festival, and OutWrite, a literary festival. On June 23rd-26th, the DC Center will have the DC Pride Film Festival 2022. In-person film screenings will take place on the 23rd at 7pm and 9pm at the E Street Cinema and virtual screenings will begin on the 24th. The DC Center hosts other community building events and social and peer support groups to help people connect. Be sure to check out their website to learn more about their work! 
  • The Library of Congress- The Library of Congress has several resources to help you learn more about Pride celebrations and the LGBTQIA+ community. Their ‘History of Pride’ is an interactive webpage that goes into detail about the Stonewall Riots and how that historical event eventually became Pride Month. They also have several online resources and archives including the ‘LGBTQIA+ Studies: A Resource Guide’ and the ‘LGBTQ+ Studies Web Archive’ which “collects and preserves online content which documents LGBTQ+ history, scholarship, and culture in the United States and around the world.” If you’re interested in accessing primary and/or secondary sources related to the LGBTQIA+ community, be sure to explore the Library of Congress’ collections. 
  • Himmelfarb Library- Himmelfarb Library has an assortment of books, journals, articles, blog posts and other resources that focus on LGBTQ+ healthcare. Last year, we published several blog posts for Pride month including a profile of Dr. Rachel Levine, the first openly trans woman to be confirmed to a federal position by Congress, a 2021 Pride resources list that featured titles in our collection, such as the Journal of Gay & Lesbian Mental Health and Transgender Mental Health,  and most recently we published a post on trans healthcare and how transphobic bias severely impacts trans patients. The staff at Himmelfarb Library are committed to providing resources that not only meet the needs of our patrons, but also encourage them to think critically about social and cultural issues that have an impact on healthcare. 

Washington D.C. and the surrounding Northern Virginia and Maryland area is home to a thriving LGBTQ+ community and there are other organizations that provide support for people. This list curated by Arlington County has additional organizations that were not featured in this blog post. And if you have an organization that you’d like to highlight, please leave their information in the comments section. May you all have a safe and joyous Pride! 

Three Black and disabled folx smile and hold mini flags. On the left, a non-binary person holds both a rainbow pride flag and a transgender pride flag, while a cane rests behind her. In the middle, a non-binary person waves the rainbow flag while in their power wheelchair. On the right, a femme waves both a rainbow and transgender pride flag. (via Disabled and Here image collection)

Photo Credit: Chona Kasinger. Part of the Disabled and Here image collection.

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(Photo Credit: Photo by Darya Sannikova)

Saturday, May 21, 2022 is recognized as World Day for Cultural Diversity for Dialogue and Development. This awareness day was first established by the United Nations in 2002 and is a day that recognizes the importance of cultural diversity as a way to overcome long-standing divisions, cultivate global peace and sustainable economic growth. 

“Three-quarters of the world’s major conflicts have a cultural dimension. Bridging the gap between culture is urgent and necessary for peace, stability and development. Cultural diversity is a driving force of development, not only with respect to economic growth, but also as a means of leading a more fulfilling intellectual, emotional, moral and spiritual life.” (United Nations, n.d.)

 If you’d like to honor World Day for Cultural Diversity for Dialogue and Development, here are some resources, organizations and events that can assist you:

  • Passport DC- Organized by Cultural Tourism DC, Passport DC occurs in May and is a month-long event filled with concerts, festivals, panel discussions and much more that highlights the rich culture of different countries and ethic groups. The Around the World Embassy Tour is likely Passport DC’s most well-known event, where many embassies open their doors to the general public and showcase their country’s cuisine, art, music or other cultural staple. 2022’s Around the World Embassy Tour occurred earlier this month, but Passport DC has a plethora of upcoming events including ‘Matcha Teabowls special exhibition at TOKIYA’, ‘The Washington Jewish Film and Music Festival’, ‘Argentine Festival’, and ‘Taiwan Night Concert 2022’. Visit Passport DC’s website to learn more. 
  • GW’s Office of Diversity, Equity and Community Engagement- GW’s Office of Diversity, Equity and Community Engagement offers events, educational resources and much more in an effort to establish an inclusive atmosphere and encourage productive dialogue about diversity, equity and inclusion on campus. Currently, they are disseminating a Spring 2022 Climate Survey to “gather information about the current university climate related to diversity, equity, and inclusion for students, faculty, and staff.” (Office of Diversity, Equity and Community Engagement, n.d.) May 20th is the last day to submit the survey. The office also offers resources on allyship, decolonization, gender and sexuality and so much more. 
  • Himmelfarb’s Cultural Competency Guide- This guide provides educational materials to help researchers and students navigate cultural awareness in the medical and health sciences field. The guide has several tabs for specific resources such as books, articles, clinical resources and more. This is a living guide with new resources added as they are made available. If you have questions or would like to offer additional resources, please contact Stacy Brody at sbrody98@gwu.edu. 

By interacting with different cultures we not only better understand ourselves, but we also connect with others on a deeper and meaningful level. World Day for Cultural Diversity for Dialogue and Development is the perfect opportunity to engage with a worldview that’s outside of your own! 

Reference:

United Nations. (n.d.). World Day for Cultural Diversity for Dialogue and Development, 21 May. Retrieved May 19, 2022, from https://www.un.org/en/observances/cultural-diversity-day

Office for Diversity, Equity and Community Engagement. (n.d.). Retrieved May 19, 2022 from https://diversity.gwu.edu/

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In an effort to remain accountable to communities who have been negatively impacted by past and present medical injustices, the staff at Himmelfarb Library is committed to the work of maintaining an anti-discriminatory practice. We will uplift and highlight diverse stories throughout the year and not shy away from difficult conversations necessary for health sciences education. To help fulfill this mission, today’s blog post will highlight data disaggregation and how it can address health disparities within the Asian-American, Native Hawaiin and Pacific Islander communities. 

As health researchers and medical professionals, data collection and management is necessary for discovering emerging health trends and understanding how behavioral changes can impact a patient's quality of life. But the way data is collected and interpreted can generate misleading information for certain communities. 

When filling out surveys or federal documents, for example new patient intake forms, job applications, or the U.S. Census survey, there’s a section that asks for race and ethnicity. There are typically a minimum of five selections for race : American Indian or Alaska Native, Black or African American, Asian, Native Hawaiian or Other Pacific Islands, and White. These categories are the minimum requirement as established by the Office of Management and Budget’s (OMB) 1997 ‘Revisions to the Standards for Classification of Federal Data on Race and Ethnicity.’ According to the standards, “Data were needed to monitor equal access in housing, education, employment, and other areas, for populations that historically had experienced discrimination and differential treatment because of their race or ethnicity. The standards are used not only in the decennial census…but also in household surveys, on administrative forms (e.g., school registration and mortgage lending applications), and in medical and other research.” (Office of Management and Budget (OMB), 1997, p. 58782) Within health sciences research, these racial categories allow researchers to understand health concerns within specific communities and can lead to preventative health measures that are tailored to a community’s concerns. But many researchers are pushing for data disaggregation which can highlight disparities that are otherwise overlooked when using broad racial categories such as ‘Asian’ or ‘Pacific Islander.’ 

“Asia consists of over forty countries, and the Pacific Islands are grouped by three subregions of Oceania (including Native Hawaiians); both have a diaspora spread across the globe. Due to differences in social, economic, and environmental factors, it is erroneous to assume that health disparities for this population do not exist.” (Bhakta, 2022, p. 133)

Photo by Kate Hliznitsova on Unsplash

Adia et. al examined the results of a California Health Interview Survey (CHIS) conducted from 2011-2017 and found that while the aggregated data suggested Asian Americans in the state appeared healthier than non-Hispanic Whites, when the data was broken into specific subgroups that fall under the Asian category many health disparities, such as high blood pressure, diabetes or asthma, were uncovered. For example, when examining the rates of high blood pressure among survey responders, 31.0% of Non-Hispanic White respondents reported having high blood pressure compared to 22.9% of All Asian respondents. But when examining specific subgroups, the researchers found that 32.3% of Filipino and Japanese respondents reported having high blood pressure. (Adia et al., 2020) “Overall, these findings support further data disaggregation in other large-scale research efforts to support interventions tailored specifically to Asian subpopulations in need…Disaggregation showed that each Asian subgroup faced disparities in health condition, outcomes, and service access that would have been masked.” (Adia et al., 2020, p. 525) When health data is disaggregated, researchers may be alert to concerning medical trends in specific communities and can work with local community partners to implement preventative screenings or devise treatment plans that allow patients to receive the best care possible. Adia et al. also noted that their findings are not applicable to Asian and Pacific Islander populations in other parts of the United States as the makeup of these populations will differ from state to state, which further highlights the need to conduct research in other communities across the country. 

In order to gather accurate data and combat health inequities within the Asian American and Pacific Islander communities, researchers will need to partner with local community members and find solutions that prevent people from accessing proper care. In a 2020 article for Cronkite News, Laura Makaroff, Senior Vice President for Prevention and Early Detection at the American Cancer Society, said,  “To make a big difference and seriously impact and reduce health inequities in Asian American populations…we need to address language access, be culturally competent, really support and engage partnerships and collaborations, include communities and people in all of research, and really be responsive and accountable to all of the different Asian American communities we serve…We need to begin and end with the community.”(Gu, 2020) Like other communities of color in the country, some sections of the Asian American and Pacific Islander communities do not fully trust the medical community. To bridge that divide, researchers will need to partner with local leaders and trusted institutions, such as religious centers, community centers, public libraries or cultural organizations, who are embedded in these communities and have a deep understanding of community members’ concerns. There are numerous ways to conduct medical research that is accessible and the local leaders and institutions can provide valuable insight to researchers. 

Photo by National Cancer Institute on Unsplash

To learn more about data disaggregation as it relates to the Asian American and Pacific Islander communities, please read any of the works cited in this article or listed in the reference section below. The importance of data disaggregation is an ongoing conversation and we hope this article will encourage you to think critically about this topic and share your ideas and solutions with your colleagues. 

References

Gu, Y. (2020, September 8). ‘A lot of differences’: Experts address health disparities among Asian American subgroups. Cronkite News|Arizona PBS. https://cronkitenews.azpbs.org/2020/09/28/experts-address-health-disparities-among-asian-americans/

Yeung, D. & Dong, L. (2021, December 13). The health of Asian Americans depends on not grouping communities under the catch-all term. NBC News|Think. https://www.nbcnews.com/think/opinion/health-asian-americans-depends-not-grouping-communities-under-catch-all-ncna1285849

 Yi, S.S. (2020). Taking Action to Improve Asian American Health. American Journal of Public Health (1971), 110(4), 435–437. https://doi.org/10.2105/AJPH.2020.305596

 Le, Cha, L., Han, H.-R., & Tseng, W. (2020). Anti-Asian Xenophobia and Asian American COVID-19 Disparities. American Journal of Public Health (1971), 110(9), 1371–1373. https://doi.org/10.2105/AJPH.2020.305846

Adia, Nazareno, J., Operario, D., & Ponce, N. A. (2020). Health Conditions, Outcomes, and Service Access Among Filipino, Vietnamese, Chinese, Japanese, and Korean Adults in California, 2011-2017. American Journal of Public Health (1971), 110(4), 520–526. https://doi.org/10.2105/AJPH.2019.305523

Bhakta, S. (2022). Data disaggregation: the case of Asian and Pacific Islander data and the role of health sciences librarians. Journal of the Medical Library Association, 110(1), 133–138. https://doi.org/10.5195/jmla.2022.1372

Panapasa, Jackson, J., Caldwell, C. H., Heeringa, S., McNally, J. W., Williams, D. R., Coral, D., Taumoepeau, L., Young, L., Young, S., & Fa’asisila, S. (2012). Community-Based Participatory Research Approach to Evidence-Based Research: Lessons From the Pacific Islander American Health Study. Progress in Community Health Partnerships, 6(1), 53–58. https://doi.org/10.1353/cpr.2012.0013

Executive Office of the President, Office of Management and Budget (OMB), Office of Information and Regulatory Affairs. (1997). Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity. https://www.govinfo.gov/content/pkg/FR-1997-10-30/pdf/97-28653.pdf

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