The Research Gap_ How Gender Bias and Discrimination affect Quality of Care for Women

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Torres 1 The Research Gap: How Gender Bias and Discrimination affect Quality of Care for Women Kaira Torres College of Public Health, Temple University HRPR 3096: Cultural Competency in Healthcare November 1, 2023
Torres 2 Gender bias and discrimination in clinical research, commonly referred to as “the research gap”, is a significant barrier to providing equitable healthcare for women. The research gap refers to the phenomenon of ignoring the physiological differences between men and women by allowing male cells, animals, and human subjects to be the standard of clinical research. If all research is conducted on males and then applied to females, it insinuates that the two sexes are physiologically identical, which is not the case. The lack of representation in research ignores the female experience, and it increases the risk of misdiagnosing and mistreating women across all fields of medicine due to a lack of data (Shepherd, 2023). Additionally, many debate if gender disparities in tenure track hiring and grant funding against women reinforces gender bias and contributes to the lack of female representation in research overall. The research gap negatively impacts women from a patient perspective by not recognizing the impact of gynecological diseases and ignoring differences between men and women when designing training and treatment standards; from a researcher perspective, gender discrimination is the supposed reason for fewer female authors and grant receivers. When addressing the research gap from the subject’s perspective, there is evidence that gynecological diseases such as endometriosis, polycystic ovarian syndrome (PCOS), fibroids, etc., do not receive the same attention as diseases that have prevalence in both sexes, such as asthma or diabetes ( Hudson, 2021). Endometriosis affects approximately 10% of women and is believed to cause approximately 47% of infertility in women. These rates are comparable to asthma and diabetes in terms of social and economic disease burden; however, unlike asthma and diabetes, endometriosis does not appear to be a public health priority. In the United Kingdom, clinical guidelines for endometriosis treatment were not released until 2017, even though the disease was microscopically identified for the first time in 1860. Additionally, the disease is not
Torres 3 listed as a disease of interest by the National Institute for Health and Care Research (NIHR) or any other major funder regardless of growing prevalence rates ( Hudson, 2021). The lack of attention given to endometriosis is a prime example of the systemic dismissal of women’s health. Some argue that little is known about endometriosis because it is truly idiopathic with no non-invasive reliable biological markers and few non-invasive treatment options ( Hudson, 2021). However, others feel gender bias is the reason little research and treatment options exist for those experiencing endometriosis. Medical sociologist Niky Hudson writes “The claiming of this non-knowledge about the disease by scientists demonstrates how a description of endometriosis as enigmatic is performed as a characteristic of the disease itself, rather than a failure of science to fully comprehend its nature. It also illustrates how knowledge about endometriosis has been left unfunded, incomplete, and undone, despite the growing accounts from women about its devastating effects,” ( Hudson, 2021, p. 8). The lack of prioritization of gynecological diseases, for example endometriosis, is a piece of the research gap, and this disparity negatively impacts women by minimizing the burden these diseases have on their mental and physical health. Many believe historical biases against women in healthcare cause this discrepancy. Early medicine labeled women as biologically inferior and prone to illnesses due to their reproductive system ( Hudson, 2021). The ancient Greeks believed a woman’s womb wandered throughout her body and caused a variety of physical and mental illnesses. All ‘diseases of women’ were grouped together under the umbrella term of ‘hysteria’. Oftentimes women experiencing ‘hysteria’ received no genuine treatment since it was believed that mental instability, deviant behavior, and/or a lack of self-care caused the disease (Cohut, 2020). The foundation of gynecology was heavily influenced by harmful stereotypes about sex and gender. It’s important
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Torres 4 to note that hysteria was recognized by the American Psychiatric Association (APA) in the DSM- III until 1980, which was only 43 years ago ( Hudson, 2021). It was not until researchers gained a better understanding of psychological disorders and doctors received more advanced technology to diagnose physical disorders, such as epilepsy which was often misdiagnosed as hysteria, that the ‘wastebasket diagnosis’ of hysteria was laid to rest (Cohut, 2020). Another piece of the research gap is the continuous overrepresentation of males in research samples for diseases prevalent in both sexes. Evidence of gender bias in subject selection can be found across various areas of research including sports medicine (Pandit et al., 2023 ; Shepherd, 2023), cardiovascular diseases (Den, 2020), and neurodiversity research (Anila et al., 2022). This lack of female representation has a rippling effect since scientific research findings heavily influence training and treatment protocols. This piece of the research gap negatively affects women’s access to quality care by increasing morbidity rates (Pandit et al., 2023 ; Shepherd, 2023), mortality rates (Den, 2020), and access to treatment (Anila et al., 2022). Gender bias in the sports medicine industry is one example of how discrimination in subject selection can increase morbidity rates in women. The industry of sports medicine works towards preventing disease and injury in active people, including performance in sports and general exercise guidelines. There is significant evidence that exercise has extensive benefits for all people, regardless of sex, age, and morbidity. However, little research exists investigating how the physiological differences between males and females affect response to and recovery from exercise (Pandit et al., 2023). Additionally, according to Pandit et al. (2023), there is significant underrepresentation of females in sports medicine research. The audit styled review investigated the participant sex ratio of strength training related research between 2000 and 2023 for young adults (0-18), adults (19-50), and older adults (50+). In studies recruiting both sexes,
Torres 5 73% were male in young adults, 63% were male in adults, and 46% were male in older adults. Additionally, for young adults, there were 205 male-only studies versus 92 female-only studies. For adults, there were 240 male-only studies compared to 44 female-only studies. For older adults, there were 112 male-only studies compared to 83 female-only studies. The authors state that the reasons for these disparities are unknown; however, they hypothesize that more females were included in the older adult group since women have a higher life expectancy and tend to retain body mass and physical fitness better as they age compared to men (Pandit et al., 2023). Similar findings were reported by researchers for the International Review of Sport and Exercise Psychology who ran an audit styled review on the sex ratios of sport and exercise psychology research between 2010 and 2020. The review reported that 53% of participants were male and 46% were female. Superficially, this appears to be evidence against a gender bias in research representation; however, there were 106 male-only studies and 48 female-only studies. The average sample size of the female-only studies were significantly higher which led to similar overall values. Additionally, females had the least representation in studies examining ‘athlete and coaching development’, ‘mental skills and performance’, and ‘cognition and decision making’ (approximately 39.2%), which can be considered the bread and butter of sports and exercise psychology. Females had the most representation in studies examining ‘discrimination’ and ‘mental health’ (approximately 50%), which drove up their overall average (Courtney et al., 2022). This is evidence that there is poor research on foundational concepts in sports and exercise psychology for female athletes. The authors suggest that this disparity is due to the strong social connotations between masculinity and sports leaving female athletes as exceptions to the status quo. The implications of gender discrimination in sports medicine and exercise psychology
Torres 6 research significantly affects the quality of healthcare available for women. Providers cannot be confident in the validity of guidelines for general exercise, injury prevention and management, coaching methods, etc since a vast majority of data is gathered from male participants. It is unknown if health guidelines should be altered with respect to sex and ignoring this fact can potentially increase morbidity rates for women across all areas of healthcare (Pandit et al., 2023 ; Shepherd, 2023). Moreover, not separating guidelines based on sex fails to take into account preventative measures for diseases more prevalent in females. For example, should older females complete more resistance training than older males to help prevent osteoporosis and aid with symptoms associated with menopause? Additionally, these guidelines grossly underestimate the impact pregnancy and menopause have on the female body. This facet of the research gap leaves pregnant and post-menopausal women unsure on how to safely and effectively prevent and treat morbidities, which goes against the fundamentals of public health. Birth preparation and pelvic floor physical therapy are new fields that are working to improve women’s health; however, closing the research gap and obtaining more data on women is necessary (Shepherd, 2023). This facet of the research gap may result in significant consequences the magnitude of which current clinicians are unaware of simply due to a lack of data. It has been widely accepted that men are more likely to experience cardiovascular disease (CVD) compared to women; however, women have higher mortality rates (Gao et al., 2019). Many believe that higher mortality rates for females are due to implicit gender bias and discrimination in clinical research. First, there is deliberation if the prevalence of CVD in women is underestimated due to diagnostic measures being predominantly standardized on male research and the recent discovery of previously unrecognized diseases under the umbrella term of CVD
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Torres 7 that disproportionately affect females (Den, 2020). Additionally, the false narrative that women are protected from CVD can lead to increased delays in seeking medical attention, increased misdiagnoses (Den, 2020), and less aggressive treatment methods after being diagnosed (Bots, 2019). This contributes to the disparity in mortality rates. Another contributor is the lack of sex- based research on CVD. According to Bots et al. 2019, women are 1.5 times more likely to experience adverse drug reactions (ADRs) in response to drug administration based on CVD guidelines. This is correlated with a higher risk of hospitalizations and lower chances of continuing treatment. Although females are significantly more likely to experience ADRs, they are grossly underrepresented and overlooked in ADR research. A systematic review evaluated ADR research between 1980 and 2018. The results found that out of 155 eligible studies, only 25% of participants were women. Additionally, only 11 of the 155 studies (7%) separated data with respect to sex. With the limited data available, there is preliminary evidence of sex-specific ADR, but more research is required to confidently report on these findings. Higher mortality rates, and possibly higher rates of ADR, for women with CVD are caused by gender bias in providers and an evidence gap in CVD research. Regarding access to treatment, there is evidence that over-representing males in neurodiversity research leads to underdiagnosing females, which limits their access to treatment. According to Anila et al., 2022, the ratio of males with autism spectrum disorder (ASD) compared to females is generally reported as 4:1. This is based on the Autism Diagnostic Observation Schedule (ADOS) or the Autism Diagnostic Interview (ADI), which are considered the gold standard for diagnosing the condition. Scoring higher on the ADOS or ADI suggests a higher frequency or severity of symptom presentation in the individual. Researchers of ADS require all participants to meet a strict cut off score on the ADOS or ADI to be considered
Torres 8 eligible for study with no room for clinical judgment. The issue is that the ADOS and ADI were standardized based on almost exclusively male research, meaning there cannot be certainty that these diagnostic measures accurately diagnose ASD in females. Paralleling gender bias in the perception of cardiovascular diseases, this false narrative may contribute to the misconception that ASD is a male dominated disorder or that females with ASD experience fewer or less severe symptoms. Moreover, this contributes to the exclusion of females in ASD research and suggests a “leaky” recruitment-to-research pipeline (Anila et al., 2022). Women with ASD are caught in a loop where clinicians know very little about ASD presentation in females, but females cannot qualify for ASD research because they do not meet the criteria that marginalized them in the first place. There is evidence that the ratio of males to females with ASD is much smaller than 4:1. When using community diagnosis standards (a triangular approach to the disease accounting for behavioral assessment, clinical interviewing, parent reports, self reports, etc) sex ratios are reported closer to 2:1 (Anila et al., 2022). Overall, there is significant evidence that females are unfairly excluded from ASD research due to discriminatory eligibility requirements. The underrepresentation of females in ASD research stunt’s the field's growth and limits women potentially with ASD from receiving the answers and treatment that they deserve. Another piece of the research gap is the lack of female professors, researchers, and authors. According to Ferrari et al., 2022, 75% of first time authors are male, 75% of research awards are obtained by men, and men receive $100,000 more in grants by the National Institute of Health (NIH) compared to women. Additionally, women are less likely to receive program director, full time professor, and other tenure track hiring positions. There is contradicting evidence on whether this under-representation is due to implicit gender bias (Ferrari et al., 2022)
Torres 9 or a lack of equitable structural support for the physical and mental demands of children and familial responsibilities for women (Ceci et al., 2023). Regardless of the cause, it is crucial that this disparity is corrected due to the correlation between a lack of female authorship and fewer female participants ( Chhaya et al., 2023 ). According to the Annals of Vascular Surgery journal, out of 1,427 eligible studies, clinical trials with a female as the first, second, or both authors were more likely to have equal participant sex ratios when compared to clinical trials with fully male authorship ( Chhaya et al., 2023 ). The research gap needs to be addressed from all angles including the lack of female representation in leadership and authorship roles. As previously established, unequal sex participant ratios give rise to countless adverse health outcomes for women. The strong correlation between increasing female authorship and equal participant representation is a significant finding since it poses a specific area of improvement and potential solution to this healthcare crisis. The pervasive presence of implicit gender bias within healthcare negatively affects the quality of care available for women. The research gap stems from this bias and directly impacts women by underrepresenting them in participation and authorship of clinical research. The effects of participant marginalization can be seen in the systemic dismissal of gynecological diseases such as endometriosis, the lack of sex-specific guidelines for providers, increased mortality rates of CVD in women, and the restriction of women’s access to treatment due to biased diagnostic measures. A lack of female leadership and authorship is another effect of gender bias; however, it is a potentially signficant area of improvement due to the correlation between increasing female authorship and equal sex participant ratios. By acknowledging and rectifying gender bias in healthcare research, the medical field can take significant strides
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Torres 10 towards higher quality, more equitable, and more effective healthcare for women. References
Torres 11 Anila, M., D’Mello, I., Frosch, E., Annie, L., & Cardinaux, J. (2022). Exclusion of females in autism research: empirical evidence for a “leaky” recruitment-to-research pipeline. Autism Research, 15 (10), 1929-1940. Doi: 10.1002/aur.2795 Bots, S., Groepenhoff, F., Eikendal, A., Tannenbaum, C., Rochon, P., Zagrosek, V., Miller, V., & Ruijter, D. (2019). Adverse drug reactions to guideline-recommended heart failure drugs in women: a system review of the literature. JACC: Heart Failure, 7 (3), 258-266. https://doi.org/10.1016/j.jchf.2019.01.009. Cech, E.A. & Blair-Loy, M. (2019). The changing career trajectories of new parents in STEM. Proc Natl Acad Sci U S A, 116 (10), 4182-4187. doi: 10.1073/pnas.1810862116. Chhaya, V.Y., Binion, C.C., Mulles, S.M., Tannhauser, P.A., Aziz, D.Z., Greenwood, J.D., Barlek, M.H., Rouan, J.R., Wyatt, T.G., & Kibbe, M.R. (2023). Gender bias in clinical trial enrollment: female authorship matters. Ann Vasc Surg, 95, 233-243. Doi: 10.1016/j.avsg.2023.03.008. Cohut, Maria. (2020).“Female hysteria: the history of a controversial ‘condition.’” Medical News Today , MediLexicon International, www.medicalnewstoday.com/articles/the-controversy-of-female-hysteria. Courtney, C. Walton, Kate., Caroline, Gao., Rosemary, Purcell. & Simon, R. (2022). Evidence of gender imbalance across samples in sport and exercise psychology, International Review of Sport and Exercise Psychology, doi: 10.1080/1750984X.2022.2150981 Den, R.H. (2020). Sex and gender matters to the heart. Frontiers Cardiovascular Medicine, 7. doi: 10.3389/fcvm.2020.587888 Ferrari, L., Mari, V., Parini, S., Capelli, G., Tacconi, G., Chessa, A., & De Santi, G. (2022). Discrimination toward women in surgery: a systematic scoping review. Annals of
Torres 12 Surgery, 276( 1), 1-8. doi: 10.1097/SLA.0000000000005435 Gao, Z., Chen, Z., Sun, A., & Deng, X. (2019). Gender differences in cardiovascular diseases, Medicine in Novel Technology and Devices, 4, https://doi.org/10.1016/j.medntd.2019.100025. Hudson, N. (2021). The missed disease? endometriosis as an example of 'undone science'. Reprod Biomed Soc Online, 4, 20-27. doi: 10.1016/j.rbms.2021.07.003. ‘ Shepherd, Tory. (2023). “By men, about men: how bad is the gender research gap for women in exercise science?” The Guardian. www.theguardian.com/australia-news/2023/jul/09/sports-research-gender-} gap-study#:~:text=%E2%80%9CThe%20lack%20of%20data%20on,at%20risk %2C%E2%80%9D%20she%20says. Pandit, A., Tran, T.B., Letton, M. et al. (2023). Data informing governing body resistance-training guidelines exhibit sex bias: an audit-based review. Sports Medicine 53, 1681–1691. https://doi.org/10.1007/s40279-023-01878-1
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