Innovative Trials are passionate about ensuring our diverse population is adequately represented within medical research. Whether it is wanting to see more people from underrepresented communities choosing science as a career and pushing for greater patient diversity in clinical trials or focusing on what we are doing internally to celebrate and promote equality and diversity. This month we celebrate Pride. So far the Equality, Diversity and Inclusion Committee at Innovative Trials wrote blogs to raise awareness surrounding several illnesses, their effects and treatments such as World Lupus Day and Malaria.
The LBGTQ+ community is an important demographic in the area of clinical research, yet there is a feeling and perception that there is a disparity in focus given to the health problems that people within this community may face.(1)
For example, a scoping review ‘The Politics of LGBT+ Health Inequality’B.(2), found that there is significant healthcare inequality for LGBTQ+ people in areas such as mental health, cancer and palliative care. These kinds of inequality have a serious effect on health risk factors, service provision and subsequent outcomes. This review concluded that improvements being made are considered ‘enough’, however, there are important gaps in the research on these issues.
Clinical trial designs look at socio-economic and ethnic factors, but do not often include data regarding sexual orientation or gender diversity. In some cases, this is explained as a way of preventing discrimination but may limit the development of effective treatments for the LGBTQ+ community.
Efforts are ongoing to identify health matters that arise for the LGBTQ+ community, their involvement in wider clinical research, and make the improvements that will bridge the gap.(3) Studies have shown that underserved populations face unique challenges, such as limited access to healthcare, which have a serious impact on the long-term health of patients.(4) Challenges in receiving care increase the likelihood that patients will avoid seeking out treatment.
Data show that the LGBTQ+ community are:
More prone to long-term health conditions, including neurological conditions and various forms of cancer, resulting from reduced access to routine care such as breast cancer screening.(4)
More likely to receive abuse from their wider community and even their own families, which leads to increased mental health risks. Young LGBTQ+ women are 5 times more likely to report mental health issues than heterosexual women from the same age group.(5)
Affected by discriminatory attitudes from their healthcare providers. A survey by the Center for American Progress found that 29% of respondents had encountered refusal of care, 23% had experienced misgendering and 29% even reported sexual assault from healthcare professionals.(6)
Affected by societal stigmas and attitudes, leading to limited awareness of medical risks and reduced willingness to seek out care or treatment. For example, there are lower rates of cervical screening among lesbian women.(4)
Omitted from clinical trial analyses. A review of a range of clinical trials, looking at couples following treatment, showed that 15% of them excluded data from homosexual couples.(7) Similarly, a review into vulnerable populations found that only 3% included mentions of LGBTQ+ people.(4) Another reported that, for many, healthcare experiences have not improved over the last decade.(5)
Improving Healthcare and Removing Inequality
Stanford University in California, USA, is currently recruiting for ‘The PRIDE Study’, which is described as being the first, large-scale, long-term nationwide health study of people describing themselves as being part of the LGBTQ+ or another sexual/gender minority. This study will look to address what common issues arise as a result of lifestyles, healthcare availability and provision.(3)
An article from the National Institutes of Health (2021) examined the progress being made in controlling HIV transmission and related deaths. Research identified a disproportionate impact on marginalised communities, such as black and latin american people, women, drug users, homosexual men and other sexual and gender minorities. Reviews have recommended strategic allocation of resources to the communities and regions most affected, in order to impact the rates of transmission. There is a recognition that the same approach may not be as effective for all groups, so interventions should take a multifaceted approach.(8)
The definition and understanding of what a transgender person is needs to be better understood. Preconceived notions are gradually being replaced by a better understanding that this is a highly varied group. These improvements need to be reflected in how research is conducted to ensure that transgender patients are afforded the same level of care as others are.(9)
Recent studies have looked at:
Endometriosis in transmasculine adolescents
The effect of Transgender Hormone Therapy (also known as Hormone Replacement Therapy (HRT) or gender-affirming hormone therapy (GAHT)) on cardiovascular and skeletal health
Diabetes rates for transgender people compared to cisgender people
A lot of work is ongoing to understand what risk factors are unique to transgender people and how these may differ for the various intersectional identities that exist. A good example of the work performed so far recognises the difference in Transgender Hormone Therapy for transfeminine and transmasculine people. There are some common factors, but also some unique risks that specialised healthcare can address.(6)
Experience at Innovative Trials
Many trials that Innovative Trials have participated in have not involved the collection of data based on patient sexual orientation. There is a concern that collecting this data may lead to discrimination, but this is balanced by the potential for valuable information gathering that could help with long-term health support for patients within the LGBTQ+ community.(10)
Given how much fluidity there is in gender/sexual identity, some patients may not be comfortable with the options presented, while others may not be comfortable sharing this information. As such, an option to refuse to answer (‘Rather not say’) must be available, although it may limit the validity of subsequent results.
Progress in this area is vital, a recent study found that the exclusion of transgender categorisation left such patients invisible within study data and worse, uninvolved in medical research.(10) One way to address this concern from patients is by including a short explanation on why gender data is being collected. By providing a clear rationale and the prospect of improving long-term health outcomes, it is hoped that response rates will improve.
As a company, Innovative Trials’ Equality, Diversity & Inclusion policy makes it clear that both Gender and Sexual Orientation are protected characteristics. The importance of respect, support and positivity are the basis of how any matters in relation to these subjects are approached. Innovative Trials provides its employees with a wealth of information as part of the annual training programme on ED&I and a hub of information on our internals site which includes information on items such as microaggressions and support networks.
Given the level of awareness that modern populations have and the desire for many to achieve true equality for all, the findings of a Stonewall survey show some very concerning numbers.(12):
52% of LGBTQ+ people said that they have experienced depression
13% of LGBTQ+ people aged 18-24 reported suicide attempts
46% of Transgender people and 31% of those falling within the LGB group reported suicide attempts
41% of non-binary people reported actually harming themselves, compared to 20% of LGBT women and 12% of GBT men
23% of LGBTQ+ people reported hearing negative or discriminatory remarks by healthcare staff
14% of LGBTQ+ people reported having avoided medical treatment for fear of experiencing discrimination
It is encouraging that reviews into ongoing inequality are being performed and highlighting areas for improvement. The fact that a growing number of studies are taking place that seek to redress the balance suggests that there is progress in the right direction. However, the success of such initiatives should be measured in terms of the closing of the gap between healthcare and outcome disparities. Most importantly, it is increasingly understood that success is not possible without LGBTQ+ involvement in not just the participation, but also the design and management of clinical trials.