"Women are more likely than men to be under treated or inappropriately diagnosed and treated for their pain," wrote Dianne E. Hoffmann and Anita J. Tarzian in their 2001 paper, "The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain". Twenty years later, the gender health gap that they were talking about persists.
Last year, as part of our Uncharted Bodies investigation, Refinery29 submitted a series of Freedom of Information requests to the NHS. We asked how long women suffering from endometriosis, premenstrual dysphoric disorder (PMDD) and vaginismus were having to wait for specialist referrals. NHS England said that they "do not hold this information" while, at a local level, several NHS trusts said that they do not collect information "at a condition level" at all. This means that while they collect data on 'gynaecology' broadly, they do not specifically record it "at a condition level" – i.e. whether the patient had endometriosis, PMDD or vaginismus. This is despite the fact that these are different conditions, requiring different treatments and specialisms.
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What this highlighted was that, despite clear evidence for there to be a focus on women's health, the NHS wasn't collecting data on this issue. And without data, how could they know that women were getting the treatment they needed, let alone improve services? Data provides information. Information enables the NHS to work out which treatments are funded, which clinics are opened and properly resourced. Without it, informed decisions cannot be made.
Our investigation highlighted that the gender health gap was underpinned by a data gap because the NHS was not recording data on women's health. That could be about to change.
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Although women make up 51% of the population, there is less evidence and data on how health conditions affect women differently.
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The government has launched a call for evidence so that they can better understand women’s experiences of the health and care system. Women are being urged to share their experiences to form the basis of the new Women’s Health Strategy. The strategy will set "an ambitious and positive new agenda to improve health and wellbeing and ensure health services are meeting the needs of women".
You have a chance to tell the Department of Health about your experience. In doing so, you could shape policy in years to come. All you have to do is submit your experience by filling out this online consultation. It will run until 13th June.
As things stand, less is known about conditions that only affect women, including common gynaecological conditions which can have severe impacts on health and wellbeing but for which there is currently little treatment. A key example of this is endometriosis, where the average time for a woman to receive a diagnosis is seven to eight years, with 40% of women needing 10 or more GP appointments before being referred to a specialist.
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There is also evidence that the impact of female-specific health conditions such as heavy menstrual bleeding, endometriosis, pregnancy-related issues and the menopause on women’s lives is overlooked. This includes the effect they can have on women’s participation in the workplace.
As well as health issues specific to women such as reproductive health, the strategy will look at the different ways in which women experience health issues that affect both women and men. Women with health conditions such as diabetes, heart conditions and osteoarthritis are also being urged to share how their condition has affected them.
This initiative is crucial. According to the Office for National Statistics, although women's life expectancy is higher than men's in the UK, women on average spend less of their life in good health compared with men. Since the 1980s, women's life expectancy in this country has been improving more slowly than men's life expectancy.
By submitting your story to the government's consultation on women's health you can help to fix this by closing the gender health data gap.
High quality research and evidence is essential to delivering improvements in women’s health yet studies suggest that gender biases in clinical trials and research are contributing to worse health outcomes for women. Although women make up 51% of the population, there is less evidence and data on how conditions affect women differently. A University of Leeds study showed that women with a total blockage of a coronary artery were 59% more likely to be misdiagnosed than men, and found that UK women had more than double the rate of death in the 30 days following a heart attack compared with men. There's a long way to go to fix the gender medical gap but this consultation is, at least, a start.
The Minister for Women’s Health Nadine Dorries told Refinery29:
"For generations, women have been living in a health and care system primarily designed by men, for men. I urge every woman, if they have not yet, to come forward and respond to the call for evidence. It is only by hearing the experiences and priorities of women from all walks of life, that we can truly develop a strategy that works for all women."