As medical care and research remain stubbornly male-centric, a global movement is afoot to end the invisibilisation of women and other underrepresented groups through inclusive policies and compelling data
Self-care, health screening and immunisation can help women maintain good health in later life and manage chronic conditions.
Invisibility is often used as a literary superpower, a device to ensure justice and fairness win in the end.
In the real world, however, when it comes to improving the health outcomes of women, particularly as they grow older, ‘invisibility’ is a corrosive force that leads to sub-optimal care across a spectrum—from mild disadvantage to mortal danger.
Women are frequently under-represented in medical research and clinical trials and their outcomes, and potential to live healthy lives, are compromised—statistics compiled by the World Health Organization (WHO) show that women in Europe spend 19 years of their life in poor health compared to 15 years in the case of men.
The fallout is considerable with disparities leaking into family life, society, equality, and economic health; it is clear there are no winners in the status quo.
Author and campaigner Caroline Criado Perez’s landmark book Invisible Women, Exposing Data Bias in a World Designed for Men highlighted how historical disregard for women’s health, which began at the dawn of medicine with Aristotle, is still at work in the days of artificial intelligence (AI). She presented an avalanche of data that catalogued how women suffered poorer health because research and clinical trials favoured an industry standard of white, middle-aged, middle-class men, who were often the easiest to recruit.
"Older women will live longer but also with disability. This impacts their ability to enjoy the added years in good health and, as most of them may not have saved enough to take care of the expenses of more disability years, their families, the community and, ultimately, the state need to step in and support them."
Her compelling evidence ranged from medical textbooks, where anatomy diagrams and drawings were almost exclusively male, to clinical data showing that women suffer 50% more adverse side effects than men because drugs were either largely tested on men or the results were not disaggregated by sex despite clear differences in biology that can hugely influence dosage and efficacy.
Educating against biases at healthcare level
Research by the British Heart Foundation found that women face unconscious biases and disadvantages at every stage of their heart disease journey, and that at least 8,243 women died due to lack of equitable cardiac treatment during a ten-year period in England and Wales.
“This imbalance exists across healthcare but it is a challenge we are rising up to meet,” says Professor Robyn Norton, co-founder and Founding Director of The George Institute for Global Health, which is dedicated to tackling global healthcare issues and improving treatments and creating healthier societies.
“For instance, the typical symptoms of heart attack in men and women have now been shown to differ but the available information is mostly based on data from men, so many women do not seek treatment because they don’t identify their symptoms as a heart attack. Similar biases exist at almost every stage of the medical intervention process as healthcare providers rely on data centred on men.
“Even healthcare professionals (HCPs) are unaware of these differences because of the absence of data and they continue doing what they have always done. But with data comes knowledge and the potential to change.
“We are only at the start of having and using these data in high-income countries, so the poorer outcomes and unfairness are likely to be at least as bad or worse in low- and middle-income countries (LMICs).”
The healthy ageing potential of women—which was recently debated in a webinar titled ‘Healthy Ageing through a Gendered Lens’—is linked to education, societal traditions and entrenched economic mechanisms. Susana Harding, Senior Director of the International Longevity Centre (ILC), Singapore, underscores that older women are disadvantaged by reduced access to work, pensions and health provisions, often because they have raised children or cared for family members.
Pushing for equity in clinical trials
“Older women will live longer but also with disability,” Harding says. “This impacts their ability to enjoy the added years in good health and, as most of them may not have saved enough to take care of the expenses of more disability years, their families, the community and, ultimately, the state need to step in and support them.” This is crucial to ensure they can work and continue to live independently and enjoy longevity, she says.
“Their marginalisation and invisibility have taken away their ability to have confidence in voicing their issues and being part of a collective that will push for their rights; and that is something we are trying to change.”
We want to engage with a broader range of organisations, including the pharmaceutical industry, to see how we can determine the mechanisms that could be used to increase diversity in clinical trials, as it is not good for the industry to be producing drugs that have more adverse reactions for women.
The ILC Singapore—part of the Tsao Foundation, which pioneers ageing and eldercare initiatives—is organising collaborations across the Asia-Pacific region to build a ‘women and ageing’ advocacy agenda and a learning exchange to raise awareness, improve education—for women and HCPs alike—and promote better practice.
Fundamental changes are needed in the way research and clinical trials are designed and facilitated; major initiatives are now turning the tide with funders, from governments to philanthropy, insisting on sex and gender analyses as a core component of trials.
And it works. The Canadian Institutes of Health Research found that the number of grant applications that reported integration of sex rose from 22% to 83% after it was announced as a priority.
The George Institute is pushing even further for equitable research by collaborating with UK medical research charities and regulators to co-create policies that mandate inclusion of sex and gender analysis; resources to train and educate applicants, funders and evaluators; and reward proposals that engage deeply with sex- and gender-based analysis.
“We started the project by asking 17 of the largest UK health research funders if they have a sex and gender policy for research, and the answer was a sobering zero per cent,” says Norton, who is also Chair of Global Health, Imperial College London, and Professor of Public Health, UNSW Sydney. “But they were really positive about working on policies to bring about change and ensure the inclusion of women and other under-represented populations in research.
“We are also working with patients with lived experience to help create these new policies and bringing together funders, government bodies and medical research journals.”
Engaging with more stakeholders
The 360-degree approach is being curated through a series of ‘policy labs’ as part of a two-year project funded by the Wellcome Trust, which is spending £16 billion by 2032 on projects that tackle the world’s most urgent health issues.
“We brought more than 50 people together at the first policy lab and there was huge enthusiasm from everyone along with a sense of relief that there was a forum where these issues could be talked about,” adds Norton.
We also want to engage with a broader range of organisations, including the pharmaceutical industry, to see how we can collectively address these issues and determine the mechanisms that could be used to increase diversity in clinical trials, as it is not good for the industry to be producing drugs that have more adverse reactions for women. “We see this as a great opportunity for positive change.”
A separate project in Australia, backed by a philanthropic donor, involves working with
medical research institutes—which represent more than 50% of the research community—to co-create policies to mandate sex and gender inclusion in research, along with staff training programmes, for all new research projects and funding applications.
Data is powerful to be able to bring them [politicians and policymakers] to the table because it provides the evidence. It's a starting point. But we also need more stories of women, the depth of their experience, so they are not faceless, so they can become more visible.
A more inclusive climate is forming, but a 2022 US National Academies Consensus Report, ‘Improving Representation in Clinical Trials’, cautioned: “While progress has been made with representation of white women in clinical trials and clinical research, there has been little progress in the last three decades to increase participation of racial and ethnic minority population groups. This underrepresentation is compounding health disparities, with serious consequences for underrepresented groups and for the nation.”
Empowering women with a platform, and the confidence, to share their lived experiences can prove a game-changer in policymaking.
Adding data power to lived experiences
Education and awareness, now powered by a vast bank of data, need to be at the core of progress, observes Harding. “We know that financial education works to help mature women (age 50-plus) prepare for old age financial security,” she says.
“We also know that self-care, health literacy training, health screening and immunisation help to ensure that women, especially older women, can maintain good health in later life and manage their chronic conditions.”
Harding argues that politicians and policymakers need to be persuaded to have a more integrated view of women and ageing as it impacts different areas of life and cannot be solved by a narrow response.
She believes this can be achieved by ensuring that scientific data works in harmony with the lived experience of women, who must be empowered with a platform, and the confidence, to share.
“Data is powerful to be able to bring them [politicians and policymakers] to the table because it provides the evidence,” she adds. “It's a starting point. But we also need more stories of women, the depth of their experience, so they are not faceless, so they can become more visible.”
She is determined and hopeful that progress will continue on health equity across genders and ages but calls for more efforts to ensure that the issues that affect and infect women’s health are recognised and included in planning and policy.
Norton adds: “There are too many areas where women suffer poorer outcomes than men and where treatment is either inappropriate or late. But we now have compelling data that clearly identifies this and there is the will to make change happen.”