Mind the healthcare gap: the impact of insufficient medical research on women’s health

Over Easter, a study by the British Medical Journal found a  'shock' link between use of the contraceptive injection and brain tumours. The injection, a progestogen contraceptive used by around 380,000 women in the UK, has been associated with a 5.6 times higher likelihood of developing meningioma (a type of tumour affecting the brain and spinal cord membranes) after a year or more of use.

*It’s important to approach these findings with caution due to the study’s small sample size. Further, whilst the causal link has been inferred by researchers, it has not been determined absolutely. So, while the relative risk may appear significant, the absolute risk remains minimal.

The study won't surprise women who have long confronted alarming headlines suggesting risks or concerns associated with hormonal contraceptives. We have been told the contraceptive pill, whether the combined or mini-pill, has been found to increase the risk of breast cancer. Oral contraceptives have also been found to increase the risk of cervical cancer, with one study finding a 60% increased risk when oral contraceptives were used for over 5 years. On a day-to-day basis, mood swings, excessive bleeding, headaches, nausea, weight gain and acne are common side effects experienced by women relying on contraception – unsurprisingly, these are the very same symptoms led the male contraceptive pill to be deemed unsuitable for use.

Despite decades of contraceptive use, significant gaps persist in our understanding: is it safe for women with a family history of breast cancer to take the pill? What are the long-term effects of contraception on fertility? Will oral contraception increase the risk of heart disease?

Frustratingly, one non-answer always seems to persist: “more research is needed.”

The research gap

The research gap in women’s healthcare extends far beyond contraception and into all aspects of women’s health. Women's health covers both female-specific conditions (for example, endometriosis and menopause) and general health conditions that may affect women differently or disproportionately.

In Caroline Criado-Perez’s illuminating book, "Invisible Women," the pervasive gender data gap in medical research and treatment is tracked throughout history. Caroline begins the story in Ancient Greece, with Aristotle’s theory of the ‘wandering womb.’ Aristotle, amongst other philosophers, postulated that female hysteria resulted from prolonged celibacy.  The womb – a restless entity – would wander aimlessly within the female body until tamed by a man when the women became impregnated. This theory continued well into the Renaissance. She also reviewed the anatomical drawings of women throughout history, which often depicted the female body as just the male body turned inside out. These pervasive, and somewhat bemusing, theories about the female body suggest why healthcare has historically prioritised the male body. 

Thankfully the wandering womb theory has disappeared from our own physiological understandings and, yet, focus on the male body as a research subject persists.  In January 2024, the World Economic Forum found that only 1% of global healthcare research and development is dedicated to female-specific conditions.

The UK suffers with one of the most pronounced gender health gaps globally. In 2022, the UK was found to have the widest gender health gap in the G20 nations and the 12^th largest globally. This gap has been caused by exclusion of women from clinical studies and drug trials due to unfounded concerns about hormone fluctuations and potential pregnancy impacts. Moreover, research investments have simply favoured male-centric studies, with issues like erectile dysfunction, affecting 19% of men, receiving five times more clinical attention than conditions like premenstrual syndrome (PMS), which affects 90% of women.

How is this impact felt by women?

• Women live longer than men but spend more of their life in poor health;
• Women with heart disease are more likely to be misdiagnosed than men, and will have worse outcomes for surgery;
• It takes the average sufferer 8 years to be diagnosed with the painful condition of endometriosis, with 40% of women needing 10 or more GP appointments before being referred to a specialist[1];
• 80% of women feel medical professionals haven’t listed to them or believed them;
• Women, especially black women, are more likely to experience 'pain bias' where a health professional overlooks or ignores the level of pain they feel;
• The number of women who have died during pregnancy is the highest in 20 years, and black women are four times more likely to die during pregnancy and childbirth than white women;
• One in ten women who worked during the menopause have left a job due to their symptoms.

The overlooked disparities in healthcare experienced by women have profound impacts on women’s daily lives.  There is an urgent need for systematic change and equitable medical practices. If the painful impact of inequality on women’s lives is not convincing enough, McKinsey's recent study found that investments addressing the women’s health gap could potentially boost the global economy by $1 trillion annually by 2040.

What is the path forward?

To address health inequities, the medical community can prioritise the following areas:

1. Investment in understanding and treating female-specific conditions and developing tailored devices, medications, and procedures, such as for endometriosis and hormonal contraception.
2. Increase diversity in clinical trial participation by encouraging women of various ages, ethnicities, and socioeconomic backgrounds to take part.
3. Improve access to preventive care, early diagnosis, and effective treatment options for women. 

However, women cannot simply wait for these systemic changes to occur. Here are some proactive steps women can take to advocate for themselves in the healthcare system:

1. Be Prepared:

• Before Your Appointment: Prepare a list of questions and concerns for your doctor. Even minor symptoms matter—include them all.
• During the Appointment: Clearly present your symptoms. A detailed, well-documented list is harder to dismiss.

2. Do Your Research:

• Understand your health condition or symptoms. Knowledge empowers you to ask informed questions and seek appropriate care.

3. Seek a Second Opinion:

• If you feel unheard or dismissed, don’t hesitate to seek another opinion. Some providers are more attuned to disparities and biases.
• Consider requesting a woman or LGBTQ+ doctor—they may offer a different perspective.

4. Be Assertive:

• Advocate for necessary tests or treatments. If denied, persist. Ask why and request documentation in your medical records.
• Use assertive language: “I’d like this test because…” or “What are the other options for my condition?”
• Bring a trusted friend or family member if self-advocacy is challenging.

5. Make a Complaint or Seek Legal Advice When Necessary:

• If you receive subpar care, take action:
• Write a formal complaint to the relevant department or practice.
• Outline your concerns and suggest improvements.
• Call the hospital or GP practice to inquire about the complaint process.

More Information

If you have suffered serious harm as a result of subpar care, which has amounted to medical negligence, we can help.  We have a long track record of recovering maximum compensation in cases spanning all fields of medicine. If you have any questions, please contact our Medical Negligence and Personal Injury team.

 

About the Author

Zoe Beels is a trainee solicitor at Kingsley Napley. She is currently in her second seat, with the Clinical Negligence team. Her first seat was in the Immigration team.