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:
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.
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
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).
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.
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
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)
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)
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
Biochemistry
Medical Research
White Only
41.90%
42.00%
Asian/Pacific Island Only
24.00%
23.00%
Black Only
5.50%
5.50%
Hispanic
5.20%
5.10%
Native American /Alaska Native
0.33%
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:
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.
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!
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!
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)
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.
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.
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
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 highlights transgender healthcare equity.
Author notes
The topics presented in this article may be difficult and/or retraumatizing for some readers. Subject matter includes medical neglect, transphobic harassment, usage of slurs, medical misdiagnosis, death of a Black transgender women by medical neglect, and cancer.
While some of the sources cited in this article are from over a decade ago and may use outdated terminology and may misgender the individuals discussed in them, this article was written by a transgender member of Himmelfarb staff, who has used appropriate language in the article itself.
August 7th, 1995. Washington, DC.
A 24 year old woman named Tyra Hunter was critically wounded in a car accident when another driver ran a stop sign (Bowles, 1995). Once first responders came on the scene and assessed the situation, instead of treating her properly, they mocked and degraded her (Remembering Our Dead, 2019). When she was finally brought to the emergency room at DC General Hospital, she was given a paralytic and slowly bled out (Fox, 1998). The delay in treatment and degrading comments took place because she was a black transgender woman.
Tyra Hunter’s case is, perhaps, one of the more extreme instances of medical transphobia and healthcare inequity. That said, Tyra Hunter is one of many transgender people who have been victimized by anti-transgender prejudice – both personal and systemic – in healthcare.
From avoidance of medical care due to fear, to biased diagnoses from prejudiced professionals, to even the blatant transphobia that first responders directed at Tyra Hunter, transgender people – particularly for Black transgender women – frequently lack access to quality healthcare. In this post, we will review the most common ways prejudice and cultural incompetency impact transgender patients, and we will consider ways medical professionals can provide equitable healthcare to transgender individuals.
Medical transphobia can take many forms, and not all of them are as blatant as what Tyra Hunter experienced on the day of her death in 1995. Even microaggressions, when experienced over long periods of time, can cause transgender patients to avoid or delay seeking treatment. A study by Seelman et al. in the journal Transgender Health found that among transgender participants, “those reporting a noninclusive PCP or who delayed needed medical care because of fear of discrimination were less likely to have had a routine checkup in the past 2 years” (Seelman et al., 2017, p. 25). This is supported by a study by Jaffee et al., which found that “1 in 3 transgender respondents delayed needed medical care for an illness or injury due to discrimination” (Jaffee et al., 2016, p. 1012), and that “the odds of delaying needed care was approximately 4 times greater for those who reported having to teach their provider about transgender people” (Jaffee et al., 2016, p. 1012).
This fear of medical discrimination is by no means irrational. A study by Rodriguez et al. analyzing data from the National Transgender Discrimination Survey which included over 6000 participants, found that “more than one-third of transgender participants reporting having experienced discrimination in health-care settings” (Rodriguez et al., 2017, p. 980), wherein discrimination was defined as, “physical abuse, verbal harassment, and/or denied equal treatment” (Rodriguez et al., 2017, p. 975). Of note here is that this number parallels Jaffee et al.’s reported 1 in 3 transgender respondents delaying treatment.
Transgender patients’ lack of trust is also attributed to “Transgender Broken Arm Syndrome,” which occurs when healthcare providers attribute unrelated medical issues to a patient’s transgender identity or transition-related care. The colloquial term comes from the scenario where a transgender patient might go into the doctor for a broken arm, but the healthcare provider questions to the patient about their gender instead. Jennifer Kelley describes this kind of scenario with a patient named Cam in the article, Stigma and Human Rights: Transgender Discrimination and Its Influence on Patient Health. Cam wanted to see the doctor about a chronic issue unrelated to her transness, and perhaps discuss hormone replacement therapy, but the provider instead questioned her about her identity, gave her a pamphlet on HIV, and told her to find a specialist (Kelley, 2021).
Another example of a transgender patient who was not able to access appropriate quality healthcare occured when Jay Kallio, a transgender man in his 50s living in New York, was discovered to have an aggressive form of breast cancer (Buxton, 2015). After receiving a mammogram and a biopsy, Kallio did not hear from his physician for many weeks. When he finally heard about his diagnosis, it was from the medical professional who performed the biopsy, who was shocked to hear that Kallio’s physician, a surgeon at a major New York hospital, had not informed him of the swiftly-worsening cancer. Kallio struggled to get in contact with this physician, and when he did, the surgeon began the conversation by stating that he wanted to send Kallio to a psychiatrist for his identity. Eventually, Kallio was thankfully able to transfer his case to another surgeon, and even beat the cancer in 2008, though he later succumbed to lung cancer in 2016. (Jay Kallio, n.d.) Ultimately, Kallio’s case is one that serves as a reminder of the very real potential consequences for medical transphobia.
There are, however, some of the most wretched instances of transphobia that involve harassment and blatant cruelty, such as what happened to Tyra Hunter. Another such case is that of Robert Eads, a transgender man who was taken to the emergency room in Georgia in 1996 after passing out. When he was diagnosed with ovarian cancer, he was refused treatment by more than a dozen medical practitioners. By the time he was accepted by the hospital of the Medical College of Georgia in 1997, the cancer had metastasized, and no treatment would have been able to save his life (Ravishankar, 2013). He died in 1999, and his story is told in the 2001 documentary, Southern Comfort, named after a popular transgender gathering that he spoke at after his prognosis (“Robert Eads”, 2007). His case is more similar to that of Jay Kallio than Tyra Hunter’s, but Eads’ slow and painful death was the result of medical transphobia in action.
Even the late transgender activist and author of the well-revered Stone Butch Blues, Leslie Feinberg (who used the neopronouns ze/hir), has discussed the transphobia ze faced after seeking treatment. In zir 2001 work, “Trans Health Crisis: For Us It’s Life or Death”, ze detailed how hospital staff gathered around zir, calling Feinberg “it” and “martian”. Feinberg chose to leave the hospital in question without being treated, and thankfully the illness ze had was not life-threatening, as it had been for Tyra Hunter and Robert Eads (Feinberg, 2001).
Knowing what we do about medical transphobia, how can healthcare professionals enact change within the healthcare system, ensure that transgender patients are treated equitably and ethically, and rebuild trust with the transgender community?
Leslie Feinberg urges in zir aforementioned work that decisions related to transgender patients involve transgender and gender variant people of all kinds. Ze made recommendations large and small, some of which have been implemented already. One of the simplest, which has been picked up by quite a few healthcare professionals, is to “refer to patients by their first and last names, not Mr. or Ms., sir or ma'am.” Another is a call for institutional standards (Feinberg, 2001), such as the Standards of Care developed by the World Professional Association for Transgender Health (WPATH). This comprehensive document acts as a guideline for health care professionals “to provide clinical guidance for health professionals to assist transsexual, transgender, and gender nonconforming people with safe and effective pathways to achieving lasting personal comfort with their gendered selves, in order to maximize their overall health, psychological well-being, and self-fulfillment.” (Standards of Care, 2012, p. 1)
Medical education has also been shown to have significant gaps in coverage of transgender healthcare. Fung et al. performed a qualitative review of Toronto medical residents’ knowledge and confidence in transgender care in 2016. The results indicated that residents had limited exposure to formal training in transgender medicine, as well as few mentors within their specializations who had enough knowledge to confidently educate or advise on such topics (Fung et al., 2020). If you’d like to learn more about the gaps in transgender health education, Korpaisarn et al.’s Gaps in transgender medical education among healthcare providers reviews a number of studies on the subject and follows with a section on effective interventions, including the use of WPATH’s Global Education Initiative (GEI), which offers training and certification courses on transgender healthcare (Kopaisarn et al., 2018).
Healthcare professionals should stay up to date on legislative matters. Our previous article for Transgender Day of Visibility discussed this at length and included a number of resources for education and for action. If you would like to learn more about the legal side of transgender health, that piece would be a good starting point. Likewise, if you would like to learn more about some terminology related to transgender individuals in a healthcare setting or about how to build rapport with transgender patients or otherwise equitably treat transgender patients, Klein et al.’s Caring for Transgender and Gender-Diverse Persons: What Clinicians Should Know, is another useful resource.
Unfortunately, transphobia may persist in society and healthcare. It is unfortunately not enough to educate ourselves alone on matters of inequity and bias; the best way to support transgender patients is to speak out against transphobia when you see it. There will be times when speaking out is difficult, but when those moments happen, please remember that if even a single person had taken action, Tyra Hunter may have survived.
References
Bowles, S. (1995, December 10) A Death Robbed of Dignity Mobilizes a Community, Washington Post. https://www.washingtonpost.com/archive/local/1995/12/10/a-death-robbed-of-dignity-mobilizes-a-community/2ca40566-9d67-47a2-80f2-e5756b2753a6/
Buxton, R. (2015, June 15) This Trans Man's Breast Cancer Nightmare Exemplifies The Problem With Transgender Health Care, HuffPost. https://www.huffpost.com/entry/transgender-health-care_n_7587506
Feinberg, L. (2001) Trans health crisis: For us it's life or death, American Journal of Public Health, 91(6), p. 897-900. https://doi.org/10.2105/AJPH.91.6.897
Fox, S. D. (1998, December 12) Damages Awarded after Transsexual Woman's Death. Polare. Internet Archive. https://web.archive.org/web/20140324052938/http://www.gendercentre.org.au/resources/polare-archive/archived-articles/damages-awarded-after-transsexual-womans-death.htm
Fung, R., Gallibois, C., Coutin, A., & Wright, S. (2020) Learning by chance: Investigating gaps in transgender care education amongst family medicine, endocrinology, psychiatry and urology residents, Canadian Medical Education Journal, 11(4), p. e19-e28. https://doi.org/10.36834/cmej.53009
Jaffee, K. D., Shires, D. A., & Stroumsa, D. (2016) Discrimination and delayed health care among transgender women and men, Medical Care, 54(11), p. 1010-1016. https://doi.org/10.1097/MLR.0000000000000583
Jay Kallio. (n.d.) Compassion and Choices. https://compassionandchoices.org/stories/jay-kallio/
Kelley, J. (2021) Stigma and Human Rights: Transgender Discrimination and Its Influence on Patient Health, Professional Case Management. 26(6), p. 298-303. https://doi.org/10.1097/NCM.0000000000000506
Klein, D. A., Paradise, S. L., & Goodwin, E. T. (2018) Caring for Transgender and Gender-Diverse Persons: What Clinicians Should Know, American Family Physician, 98(11), p. 645-653.
Korpaisarn, S., Safer, J. D., & Tangpricha, V. (2020) Gaps in transgender medical education among healthcare providers: A major barrier to care for transgender persons, Reviews in endocrine & metabolic disorders, 19(3), p. e271-275. https://doi.org/10.1007/s11154-018-9452-5
Main Page. (n.d.) Global Education Institute. WPATH. https://www.wpath.org/gei
National Center for Transgender Equality. (2007, January 16) Robert Eads, National Center for Transgender Equality. https://transequality.org/blog/robert-eads
Ravishankar, M. (2013, January 18) The Story About Robert Eads, The Journal of Global Health. https://archive.ph/20130914005716/http://www.ghjournal.org/jgh-online/the-story-about-robert-eads/
Rodriguez, A., Agardh, A., & Asamoah, B. O. (2017) Self-Reported Discrimination in Health-Care Settings Based on Recognizability as Transgender: A Cross-Sectional Study Among Transgender U.S. Citizens, Archives of Sexual Behavior, 47(4), p. 973-985. https://doi.org/10.1007/s10508-017-1028-z
Seelman, K. L., Colón-Diaz, M. J. P., LeCroix, R. H., Xavier-Brier, M, & Kattari, L. (2017) Transgender Noninclusive Healthcare and Delaying Care Because of Fear: Connections to General Health and Mental Health Among Transgender Adults, Transgender Health, 2(1), p. 17-28. https://doi.org/10.1089/trgh.2016.0024
Transgender Day of Rememberance. (2019, February 17) Remembering Our Dead: Tyra Hunter, https://tdor.translivesmatter.info/reports/1995/08/08/tyra-hunter_washington-dc-usa_04a01786
World Professional Association for Transgender Health. (2012) Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People. 7th ed. https://www.wpath.org/media/cms/Documents/SOC%20v7/SOC%20V7_English.pdf
April 25 is National DNA Day. It’s a day where researchers, teachers, students and the general public can learn more about the history of genomics and DNA, as well as learn about the advances researchers have made over the years as they seek to understand what DNA can reveal about our shared humanity and our individual traits. According to the National Human Genome Research Institute, “National DNA Day is a global movement to mobilize, energize and empower communities, educators and students to innovate, collaborate and discover the promise of our shared humanity and connection to the natural world.” National DNA Day commemorates two significant events in the history of DNA: the completion of the human genome project in 2003 and the discovery of the double helix in 1953. In recent years and with a deeper understanding of DNA, there has been a discrepancy between the general public’s perception of the usefulness of DNA and what this information actually means for humanity. By examining the rise in popularity of at-home ancestry testing kits, the role DNA plays in the legal system, and disease research and DNA, it’s clear that our understanding of the human genome will not provide simple answers to complex questions. Researchers and the public must balance our appreciation of DNA with the reality that this research only deepens ongoing conversations about humanity.
Over the past few years, there has been a significant increase in ancestry testing and companies such as 23 and Me or Ancestry.com allow individuals to map their genetic ancestry through a simple DNA test. Ancestry tests can connect long lost family members to one another. For people who do not have access to an extensive well-documented family history, such as many African-Americans, ancestry testing can shed light on people’s countries of origin. These testing kits can also encourage people to learn more about cultures and groups. Many of these tests provide people the opportunity to connect with each other in meaningful ways. But many researchers and critics point out the limitations of ancestry testing. Many testing companies rely on their own databases to compare and create user results. If these databases lack genetic information from certain populations or groups, then the ancestry testing results will not be an accurate representation of people’s family lineage. “Commercial ancestry testing is an unintended spin-off from basic research, but the basic research was designed to answer questions about population migration in a probabilistic manner and not to provide concrete and detailed genealogical information to individuals.” (Wailoo et al., 2013, p. 58) Ancestry testing can also lead people to believe our ethnicity or race can be segmented into neat and clear categories. Many scientists have stated there is no biological or scientific basis for race, yet these ancestry tests unintentionally suggest otherwise as they often use broad racial or ethnic categories that do not capture the true diversity across the world.
Ancestry testing is a great way for people to connect with relatives they’ve lost contact with or for people to have some idea of where they may originate from. But it’s important these tests do not perfectly capture our family history and the initial results may change as ancestry testing companies expand their internal DNA databases.
One of the most popular ways in which DNA testing is used is in the realm of the legal system. Popularized by shows such as Law and Order or CSI, forensic science and DNA testing are often seen as pivotal aspects of any legal investigation. With the rise in DNA testing, many police investigators have successfully apprehended alleged suspects after a crime has been committed. Criminal cases that were opened for years were able to be closed once the collected DNA was analyzed in a lab. But there have been cases of innocent people being wrongfully accused and jailed when errors in DNA handling or testing caused investigators to chase alternative leads. “The problem, as a growing number of academics see it, is that science is only as reliable as the manner in which we use it—and in the case of DNA, the manner in which we use it is evolving rapidly.” (Shaer, 2009) DNA has a complex role in the legal system. It can provide a sense of certainty when law enforcement officers are investigating a case, but poor handling or lab standards can sometimes lead to wrongful convictions that are difficult to overturn. And there are cases where defense attorneys have relied on DNA analysis to free wrongfully convicted individuals. “Among them [ready to move beyond concerns of DNA use in criminal trials] were Dream Team members Barry Scheck and Peter Neufeld, who had founded the Innocence Project in 1992. Now convinced that DNA analysis, provided the evidence was collected cleanly, could expose the racism and prejudice endemic to the criminal-justice system, the two attorneys set about applying it to dozens of questionable felony convictions. They have since won 178 exonerations using DNA testing; in the majority of the cases, the wrongfully convicted were black.” (Shaer, 2009)
Advances in DNA and genetic research has allowed individuals to better track hereditary illnesses, thus giving them the opportunity to take early steps to address potential health concerns. Through genetic testing individuals can learn about potential inherited susceptibility to diseases such as certain types of cancers, certain blood disorders or respiratory diseases. In this realm, researchers have cautioned that this form of testing could potentially be misinterpreted by individuals seeking to link certain racial groups to certain inherited diseases. “It is in the area of disease studies that the relationship between race and genetics becomes the most susceptible to misinterpretation and distortion…Work carried out by geneticists Sara Tishkoff and others make it clear that sweeping conclusions about African Americans and disease-associated genetic variables are untenable.” (Wailoo et al., 2013, 59) While genetics can play a significant role in an individual’s susceptibility to a disease, other factors are just as significant and should be carefully studied and addressed. “For most diseases in the United States that differ in incidence by race, racial differences correspond to socio-economic or cultural differences. Most of the differences in incidence of asthma, hypertension, and heart disease by race can be explained by differences in income and environmental risk factors.” (Wailoo et al., 2013, 60) The role that genetics play in determining a person’s susceptibility to a disease is important, but should be considered alongside other variables and it’s important to avoid sweeping generalizations.
The discovery of DNA and the gene sequencing process allows humanity to better understand our makeup and answer some questions about our origins. In the conversations on who we are, where we come from and where we can go, DNA has an important voice that provides a unique insight into our inner workings. For this National DNA Day the general public should continue to learn about and engage with DNA research, while also remaining aware that DNA research will raise as many questions as it does answers. “Science is technical and difficult to comprehend but that does not absolve scientists of the responsibility to inform the public about their work, explain their methods and their rigor, admit the limitations and areas of controversy and uncertainty, and examine its wider relevance. Conversely, the difficulty of understanding and digesting science does not absolve the general public from acknowledging its importance and its contributions.” (Wailoo et al., 2013, 62) To learn more about National DNA Day or the Human Genome Project, please explore the National Human Genome Research Institute website.
Works Cited:
National Human Genome Research Institute. (n.d.). National DNA Day. Retrieved April 22, 2022. https://www.genome.gov/dna-day
Wailoo, K., Nelson, A., & Lee, C. (Eds.). (2012). Genetics and the Unsettled Past: The Collision of DNA, Race, and History. Rutgers University Press. http://www.jstor.org/stable/j.ctt5hj79f
Did you know that April is National Autism Awareness month? Regardless of how much you understand about the Autism Spectrum Disorder, there are available resources that can help to expand your current perspective, which may be helpful in making appropriate treatment decisions for Autistic patients
For an introduction to the Autism Spectrum, Autism.org has a 30 minute 101 course designed to increase your knowledge on what it is and the early signs of Autism. Additionally, the CDC has resources available on their website appropriate for families of autistic children and others providing care for them.
Over the past twenty years, Autism Spectrum Disorder (ASD) cases have been on the rise. According to the CDC, in 2000, it was estimated that 1 in 150 children developed ASD. By 2018, that number increased significantly to 1 in every 44. As Autism Spectrum Disorder becomes more prevalent in the population, physicians will be more likely to provide medical care to Autistic patients during their medical career.
