Women’s Data Health Gap in Fertility
Written by Valicia Burke-France, a women’s health writer with over 10 years experience.
Introduction to the Data Health Gap
With women* making up half of the population, it's unfortunate that the women's health area is considered a niche, untapped market. But, it's unsurprising as women's health needs have been neglected for centuries.
Before the 1990s, women—especially those of childbearing age—were excluded from clinical trials. The main concerns were potential risks to women and their unborn children, and the belief that hormonal fluctuations would complicate data analyses. As a result, most of the data guiding our women's healthcare decisions and innovations is based on male biology. This includes public health data, which does not adequately represent diverse populations within our communities. When it comes to women, these realities result in relatively poorer healthcare outcomes compared to those of male counterparts.
"The Gender Health Data Gap refers to the difference in the quality and quantity of health data collected and analysed between women and men." FemTechnology, 2023
Such sex-based disparities contribute to a critical knowledge gap that the modern scientific and medical community is working hard to close.
Paving the Way to Inclusion
By the end of the 20th century, advocacy for diversity in clinical trials intensified. Part of the response was reflected in the establishment of the International Council for Harmonisation (ICH) in 1990. The ICH established a unified drug development standard adopted by regulatory agencies worldwide. However, it also emphasised the importance of including diverse populations in research to support broader representation and more effective outcomes.
In 1993, the US took a significant step forward with the NIH Revitalization Act, which required the inclusion of women and minorities in clinical research. The formation of the UK’s Medicines and Healthcare Regulatory Agency (MHRA) in the early 2000s further supported adherence to ICH standards, including its study diversity goals.
Underfunding in Women's Health: An ongoing challenge
Still, the solution to closing the data health gap remains complex and multi-faceted. One of the most significant challenges is the lack of funding for initiatives focused on conditions that predominantly affect women (such as migraines and mental health issues), affect women differently (like cardiovascular and Alzheimer's diseases), or are exclusive to women's health issues (for example, female fertility and gynaecological disorders).
As highlighted by Mirin in 2021, research funding is often disproportionately provided to men at the expense of women. This disparity was further emphasised by Smith in a 2022 Nature Journal report, which pinpointed the significant gender gap between disease burden (i.e., how much a disease affects people and their communities) and research funding. Recent statistics also reveal how just about 2% of billions in venture funding is allocated to women's health. These findings highlight how hard attracting investors to women's health and femtech startups can be.
Impact of the Data Health Gap on Fertility
The data health gap significantly affects every aspect of women's health, including fertility goals for women trying to conceive (ttc). As a result, it remains challenging to set the best health standards and provide optimal fertility health care for different populations.
Fundamental Knowledge Gaps
The hormonal fluctuations that bar women from participating in clinical trials are essential for understanding women's health. This data would support accurate fertility tracking, health predictions, and effective personalised therapies. The menstrual cycle, which females experience for more than 30+ years of life, is considered a key indicator of a woman’s health. Yet, limited menstrual health data for diverse populations hampers our understanding of what defines optimal health across different groups. Furthermore, common period-related conditions such as premenstrual syndrome and dysmenorrhea remain poorly understood.
In fertility research, assisted reproductive techniques have been successfully used for over 40 years. However, the success rate for human-assisted reproduction is still relatively low. More high-quality research is needed in this area. Additionally, a personalised approach using patient data can help uncover the best way to achieve individual fertility goals.
Misdiagnosis and Delayed Diagnoses
Although women seek healthcare more proactively than men, they remain relatively more underdiagnosed and misdiagnosed for critical health conditions. One in every four women is undiagnosed for women's health conditions, with certain diagnoses (such as endometriosis) remaining elusive for years. Recent research on 112 acute and chronic diseases also highlighted the comparatively extensive delays women face between symptom onset and diagnosis. Furthermore, knowledge gaps and biases from clinical trials are then reflected in medical education, which results in a healthcare system being ill-prepared to effectively address women's health issues.
Lack of Support & Resources
The gender data health gap also results in women having to advocate more strongly for their healthcare needs. A survey effort by the Women's Health Strategy for England revealed that nearly 84% of women felt unheard by their healthcare providers. These women described feelings of being dismissed, judged, or rushed. Many also needed help finding helpful resources and uncovering effective healthcare solutions.
In the realm of fertility, the absence of comprehensive data for specific populations surely limits our ability to tailor treatments as optimally as possible. This data gap affects our understanding of side effects, risks, and necessary interventions, ultimately influencing outcomes for women trying to conceive.
The data gap in health research undeniably impacts every facet of women's health, including fertility goals. Addressing this gap is a crucial first step for advancing our understanding of women's health as a whole, and improving healthcare for women everywhere.
The Role of Technology and Innovation in Women's Health
FemTech is revolutionising women’s health, with modern technology helping to bridge the gender data health gap. As the inclusion of women in critical studies expands, recent developments have begun improving data accessibility, in part due to an accelerated digitisation of health information.
Digital acceleration during the pandemic
Since the COVID-19 pandemic, healthcare has undergone a digital revolution. Innovations such as remote monitoring devices, telehealth, and consumer apps have significantly increased the collection of all health data (including women’s health data) for clinical trials and personal use.
These innovations include smartphone apps, wearables, websites, and other platforms, which help women track everything from their mental wellness and menstrual cycles to fertility, pregnancy, and menopause. Digital fertility tools are enhancing our understanding of the factors influencing fertility and helping to predict the best times for each person. They support more personalised approaches for improved health outcomes and uncovering useful ttc tips and insights that support success with fertility goals.
Additionally, artificial intelligence and machine learning models can be used to create more comprehensive health data sets. We must ensure that these data models do not reinforce existing biases and that patient data privacy laws are respected.
Fertility Research & Health Data Goals
More studies are still required to bridge the knowledge gap in fertility conditions as well as to explore optimal treatment options. Additionally, it's important to note that fertility apps can experience considerable limitations as their algorithms rely on incomplete, biased data sets. In addition, some apps are also developed without scientific input, which limits their effectiveness across different populations. When it comes to fertility research, there is a need for more high-quality studies, stakeholder collaborations, and enhanced socioeconomic and racial diversity across study populations.
Advocacy and Change
All data regarding diseases and the global burden also play a critical role in determining the conditions experienced, power, and allocation of resources for different groups of people. Poor and incomplete data sets allow healthcare providers, insurance companies, researchers, policymakers, and other stakeholders to make decisions directly affecting our health and well-being without understanding or appreciating the full picture and potential impact of their decisions.
"Health equity is achieved when everyone can attain their full potential for health and well-being." WHO, 2010
UK Efforts to Close the Gap
For this reason, many efforts are ongoing to close the health data gap. For example, over 1.3 million women were recruited between 1996 and 2001 into one of the largest ongoing prospective studies on women’s health—The Million Women Study. Some key findings include the association of hormonal therapy and cancer risk and the effect of lifelong smoking in women. Ongoing studies continue to investigate risk factors related to the development of cardiovascular diseases and neurodegenerative disorders in women.
More recently launched initiatives include the UK’s 2022 Women’s Health Strategy, which aims to address disparities in women’s health, particularly in the workplace. The National Institute for Health and Care Research also initiated a £50 million challenge to tackle maternity disparities and enhance female representation in medical research. Additionally, the Human Fertility and Embryology Authority launched an IVF dashboard to provide access to data that will support both researchers and patients regarding their fertility-related goals.
Getting Involved in Women’s Health Advocacy
Despite these advancements and initiatives, biases and gaps persist, impacting medical education, diagnoses, and treatment for women. You can make a difference by engaging with your community, advocating for policy changes, supporting better education on women’s health in schools and medical programs, and participating in or promoting clinical trials.
Translating research into tangible impact takes an average of 17 years, and we have decades of data to catch up on. But together, we can more quickly close the gap towards achieving health equity, ensuring everyone, including women, can reach their full potential.
Key Takeaways:
- Gender health gaps prevent us from fully grasping the extent of suffering and disruption caused by women’s health issues.
- The lack of detailed data results in inadequate support, misdiagnoses, and poorer fertility outcomes for women.
- Comprehensive sex-disaggregated data is vital for uncovering how biological mechanisms and socioeconomic factors uniquely affect fertility.
- Closing the gender data health gap is key to improving these outcomes and advancing effective fertility care.
Every effort can make a difference. Here’s what you can do to contribute:
- Support vital women’s health studies – such as participating in The Million Women Study.
- Volunteer and/or donate to a women’s health initiative– such as your favourite non-profit organisation.
- Spread awareness within your community – start by sharing this post on your favourite social media platform.
What will you do today to help advance women’s health and fertility?
* when we refer to female, we include women and those whose sex was recorded female at birth
