Gender bias and the importance of equity in healthcare

Gender equality has been a long-held dream, fought for by women and our allies for decades, yet according to the 2022 Global Gender Gap Report, we still have 132 years to wait for gender parity. That’s if we continue at our current rate of progression. Unfortunately, the report also found that the risk of us backsliding rather than making progress is very real, so even that intangible 132-year finish line isn’t guaranteed. 

In the battle for gender equality, healthcare is key. If women’s health needs aren’t being met or our access to the right care isn’t available, it impacts every other aspect of our lives and how we are able to contribute to the workplace, at home or to society at large. Historically, healthcare, like every other societal construct has deprioritized the needs of women, viewing us as subordinate and dismissing us and our ‘fluctuating hormones’ as too complex to study.  For decades, studies took the male body as ‘the norm’ and this became built into the very foundations of medicine.  

Although things are slowly changing, this historic bias and how it has played out in the development of clinical research and medicine has made women sicker and resulted in poorer outcomes across a variety of conditions including chronic pain, bleeding disorders, autoimmune conditions, mental health and cardiovascular issues. It has also led to a lack of advancement in understanding, diagnosing and treating health conditions that only impact women and those assigned female at birth.

So where did it all begin?

Gender bias in medicine can be traced back as far as the Greek philosopher Aristotle who described women as ‘mutilated males’ with their “genitalia turned inside out”. Women were perceived as the subjects of male rule with one job and one job only… to procreate. 

Aristotle added that women were more ready to weep and to be “subject to depression of spirits and despair than the male”. This view is often seen as the catalyst for one of the hardest to shake, ingrained biases within healthcare, that women’s pain has an emotional or psychological cause rather than a physical one.  

Despite the advancements that have been made since medicine became rooted in science, rather than constructed in historic opinion, and thanks to the tireless work of feminists across the generations, recent research highlights how much power this myth still wields. One study from 2018 found that doctors often view men with pain as ‘brave’ and women as ‘emotional’. It went on to reveal that women are less likely to receive effective pain relief and more likely to receive a mental health referral than men. 

This view that women’s bodies are ‘other’, that men are the ‘norm’ continues to impact nearly every corner of healthcare, from the diseases that are allocated the biggest research budgets to how patients are perceived by clinicians, right through to securing a diagnosis and effective treatment. 

The impact of gender bias in healthcare

Women have been excluded from, or been lacking in, clinical trials and research both historically and up to this very day. This has impacted understanding of how diseases impact women and how drugs for different conditions affect us. Most drugs are prescribed to men and women in the same doses, but a recent study looking at how different drugs impacted these two genders highlighted that in more than 90% of cases women experienced stronger side effects than men.  

Although hard to believe, it was only in relatively recent history (1993) that a landmark ruling in the US, stating that women should be included in clinical trials, came into effect and began impacting trials on a global level. It means that studies that pre-date this, have huge blind spots when it comes to understanding female health and it’s an ongoing process to get trial numbers to a point where women have equal representation. 

As well as the lack of knowledge surrounding women’s health, historical studies and beliefs have a knock-on effect as to how women are dealt with when they present with concerns at a healthcare setting. Research from the British Heart Foundation showed inequalities at every step for women in their medical journey with heart concerns, primarily because there is a long-held belief that myocardial infarction (a heart attack) is a male issue. The data also revealed that women are 50% more likely to receive the wrong initial diagnosis when having a heart attack.  

And that’s just one condition.  

Data on conditions that only impact women show stark differences in funding levels to those diseases that also impact men. This gap is clear in figures from the National Institute of Health that reveal that diabetes receives 1,500% more funding per woman than endometriosis. Which is hugely significant when you consider that it affects nearly the same number of women as endometriosis, which remains a hugely understudied and underfunded condition.

"Data that highlights the funding disparities in healthcare is shocking, but sadly is something I have come to expect. When we were out trying to secure funding for our menstrual health app, I was told on more than one occasion, by both men and women that financial support for Medtech innovation is given… and this is a direct quote… in ‘areas that matter’ such as heart health, liver health and diabetes.

I wasn’t about to be deterred by this, but it has been an uphill battle, when it shouldn’t be, considering just over half the world’s adult population menstruates. This attitude also gave us the idea for our labs division. So alongside what our app will offer in terms of endometriosis and period tracking, we are also conducting our own research into menstrual health issues, in the hope of making much needed advancements."

Justyna Strzeszynska, Founder and CEO of Joii

Equity versus equality

Equity, a term that often gets used interchangeably with equality, is one of this year’s International Women’s Day themes… #EmbraceEquity. It’s a concept that many believe should underpin all conversations regarding gender equality, because it recognises not every woman starts from the same place and that we can’t make everybody equal by handing them the same tools and resources.  

The term ‘women’ is a broad one. Lack of representation and bias within healthcare are further intensified for women of colour, those living with disabilities and those from different socio-economic backgrounds as well as the trans and non-binary community. Women living with long term health conditions such as PCOS or endometriosis are also not starting on a level playing field. Taking all of this into account, we can’t expect to find a ‘one size fits all’ solution to gender health inequality. 

Since we started Joii in 2019, we have read hundreds of research papers, spoken to countless women and medical professionals and heard dozens of heart-breaking stories. As we evolved through these experiences, the need to address equity as a key factor on the road the gender health equality became ever clearer. 

"I was told on more than one occasion, by both men and women that financial support for Medtech innovation is given … and this is a direct quote… in ‘areas that matter’ such as heart health, liver health and diabetes."

Justyna

Better diversity of representation in clinical trials and reporting of that representation

Traditionally medical research has been done on healthy young and middle-aged men, with women underrepresented at best, and omitted at worst. Whilst there has been some improvement in the number of women taking part in trials in recent years, there is still a lack of diversity in the women that are included.  

The issues here are many. Very few trials report the intersection of race and gender, so the number of women will be noted and the number of participants of colour will be noted but no one is reporting on how many women of colour take part. Not only does it make it hard to fully understand the deficit of representation, but when race and gender are not reported that means there is a serious lack of data for that population regarding how the drugs or vaccines being trialled work for them. Or how they are impacted by different diseases and conditions. 

In the area of menstrual health, this plays out in many ways, but not least in the diagnosis of endometriosis. Research has shown for instance, that Black women are less likely to be diagnosed with endometriosis overall than their white counterparts, but it doesn’t mean they are less likely to have it. Misdiagnosis is a key factor, with endometriosis being mistaken for other conditions such as fibroids, because Black women are more likely to be impacted by them. Implicit bias in the medical community relating to how Black people feel pain also plays a part.  

The only way to truly understand how endometriosis impacts Black women, is to ensure they are featured in clinical trials in the same numbers as white women and women from other ethnic backgrounds. 

"Those of us who live with menstrual health conditions feel like we are on survival mode every single month. That isn’t starting from the same place as everyone else, that’s an extra hurdle (or ten) to be jumped, time and time again."

Justyna

Menstrual equity through education and understanding

Those living with menstrual health conditions lose up to 84 days a year to their symptoms. This means missing out on school, work, exercise and social events. Despite living with debilitating pain each month, numerous individuals speak of the years they spent being dismissed or told their symptoms are “normal” or “just a bad period.” 

The fact that there is so little understanding of just how bad the symptoms of menstrual health conditions are, can in part be traced back to the lack of education people receive on this at school. Research from a 2022 study in the UK showed how little focus there still is on ‘lived experience’ within menstrual health education, revealing that just 14% of lessons cover this compared to biology (56%) and provision of menstrual products (40%).  

This data highlights that children and teens aren’t being equipped with enough information regarding different menstrual health conditions or what symptoms they might face, the impact they can have on their ability to function day to day and how to handle them. It’s vital to drive awareness that not everyone will experience periods in the same way and not everyone is starting from the same place when it comes to their menstrual health. Millions of people are living with symptoms that impact their daily lives and prevent them being able to work, enjoy a social life or contribute as they would like to their community.  

Assuming that all periods are broadly the same puts those living with menstrual health conditions at a severe health disadvantage. It delays access to specialists, lengthens diagnosis timeframes and puts off treatments that could improve symptoms. It can also exacerbate the problem and lead to additional health problems including mental health issues. People living with menstrual health conditions need different products, different tools and different access to healthcare to live their lives to the fullest, than those whose periods don’t impact their daily lives. Menstrual equity is key in the fight for genuine gender equality.   

"Better education in schools and opening up conversation around periods is just the starting point. We’ve heard first-hand from far too many people who have also felt their clinicians were in the dark about certain menstrual health conditions, which resulted in them not getting the care or treatment they needed. Women’s health needs to be given the attention and understanding it deserves from primary through to medical school, it’s a vital step on the path to levelling the playing field.

Those of us who live with menstrual health conditions feel like we are on survival mode every single month. That isn’t starting from the same place as everyone else, that’s an extra hurdle (or ten) to be jumped, time and time again. Menstrual health is such a vital factor within overall health, and we can’t get close to closing the gender health gap or making the long-held dream of gender equality a reality until menstrual equity is reached."

Justyna

Education and understanding are the tip of the iceberg when it comes to menstrual equity and there is a long way to go before it even starts to get the investment, research and attention it truly deserves. Menstrual health was defined in a recent research paper as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity, in relation to the menstrual cycle.” Until such a day that every person who menstruates is enjoying their best menstrual wellbeing, menstruation will continue to impact people’s ability to participate in society and live their lives to the fullest, and gender equality will remain a far-off dream.

Written by: Joii Team

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Joii Limited Privacy Policy

This Privacy Policy describes what Personal Data we collect, how we handle it, why we need it and who we share it with. We may also supplement this Privacy Policy with Data Protection Notices where appropriate.

Who are we?

We are Joii Limited (referred to as ‘Joii’), a limited company incorporated in Ireland and registered under company number 650096. Our registered office is Apartment 15, Thomastown House, Spencer Dock, Dublin, Ireland.

Data Protection Definitions

We use certain expressions throughout this document such as Personal Data and Special Categories of Personal Data.

Personal Data means any information relating to an identified or identifiable natural person (‘data subject’); an identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.

Special Categories of Personal Data includes information revealing a person's racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership, and the processing of genetic data, biometric data for the purpose of uniquely identifying a natural person, data concerning health or data concerning a natural person’s sex life or sexual orientation.

Data Controller means the entity which, by itself or jointly with others, determines the purpose and means of processing Personal Data. Joii the Data Controller in respect of Personal Data and Special Categories of Personal Data covered by this Privacy Policy.

This Privacy Policy sets out the basis on which any Personal Data and Special Categories of Personal Data we collect from you, or that you (or others) provide to us, will be processed by us. Please read the following carefully to understand our practices regarding your Personal Data and Special Categories of Personal Data and how we will treat it.

When you become our customer, the processing of your Personal Data and, in accordance with legal requirements, Special Categories of Personal Data, will become a condition of the contract between us as we require certain information in order to be able to provide you with our products. In those circumstances, if you do not wish us to process your Personal Data and, in accordance with legal requirements, Special Categories of Personal Data, we may be unable to provide our services to you.

If you have any queries on data protection, Justyna Strzeszynska, may be contacted at: justyna@joiicare.com or you can contact on 01 458 6597.

What personal data do we collect from you?

Advertising

Personal Data: Cookies; Usage Data; various types of Data

Google Analytics

Personal Data: Tracker; Usage Data

Contacting the User

  • Contact form - Personal Data: email address; first name; last name
  • Mailing list or newsletter - Personal Data: first name; last name; email address

Data transfer outside the EU

Data transfer abroad based on consent

Personal Data: various types of Data

Hosting and backend infrastructure

Google Cloud Storage and Google App Engine

Personal Data: various types of Data as specified in the privacy policy of the service

Google Tag Manager

Personal Data: Usage Data

User database management

Personal Data: city; email address; various types of Data

How long do we keep hold of your personal data and special categories of personal data?

The time periods for which we retain your Personal Data and Special Categories of Personal Data depends on the type of information and the purposes for which we use it. We will keep your information for no longer than is required or permitted.

All Personal Data and Special Categories of Personal Data will be retained for the duration of the periods set out in our Data Retention Policy. These periods of time are subject to legal, tax and regulatory requirements or to enable us to manage our business.

If you would like further information, please contact us at the details provided below.

In some circumstances we may anonymise your Personal Data and Special Categories of Personal Data so that it can no longer be associated with you, in which case we may use such information without further notice to you. This anonymised data may be used for research or analytical purposes.

What are your rights with respect to your personal data and special categories of personal data?

You have the following rights:

  • To access the Personal Data and Special Categories of Personal Data we hold about you.
  • To require us to rectify any inaccurate Personal Data or Special Categories of Personal Data relating to you without undue delay.
  • To have us erase any Personal Data or Special Categories of Personal Data we hold about you in specific circumstances, e.g. where it is no longer necessary for us to hold the Personal Data or Special Categories of Personal Data for the administration of your contract or if you have withdrawn your consent to the processing.
  • To object to us processing your Personal Data or Special Categories of Personal Data in specific circumstances, e.g. processing for profiling or direct marketing.
  • To ask us to provide your Personal Data and Special Categories of Personal Data to you in a portable format or, where technically feasible, for us to port that information to another provider provided it does not result in a disclosure of information relating to other people.
  • To request a restriction of the processing of your Personal Data or Special Categories of Personal Data.
  • In the limited circumstances where you may have provided your consent to the collection, processing and transfer of your Personal Data or Special Categories of Personal Data for a specific purpose, you have the right to withdraw your consent for that specific processing at any time. Once we have received notification that you have withdrawn your consent, we will no longer process your information for the purpose or purposes you originally agreed to, unless we have another legitimate basis for doing so in law. In that instance, any processing that we have carried out before you withdrew your consent remains lawful.

You may exercise any of the above rights by writing to us at our registered office : Justyna Strzeszynska Joii Limited T\A Joii, Apartment 15, Thomastown House, Spencer Dock, Dublin D01 P7N2 or by emailing us at justyna@joiicare.com.

In the above circumstances, we may need to request specific information from you to help us confirm your identity and ensure your right to access the Personal Data or Special Categories of Personal Data (or to exercise any of your other rights). This is another appropriate security measure to ensure that Personal Data or Special Categories of Personal Data is not disclosed to any person who has no right to receive it.

You may lodge a complaint with respect to our processing of your information directly with the Supervisory Authority, the Office of the Data Protection Commission with an address at Canal House, Station Road, Portarlington, Co. Laois.

Data Security

We have put in place measures to protect the security of your Personal Data and Special Categories of Personal Data.

Details of these measures are available upon request.

Third parties will only process your Personal Data and Special Categories of Personal Data on our instructions and where they have agreed to treat the information confidentially and to keep it secure.

We have put in place appropriate security measures to prevent your Personal Data and Special Categories of Personal Data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your Personal Data and Special Categories of Personal Data to those employees, agents, contractors and other third parties who have a business need to know. They will only process your Personal Data and Special Categories of Personal Data on our instructions, and they are subject to a duty of confidentiality. We have put in place procedures to deal with any suspected data security breach and will notify you and any applicable regulator of a suspected breach where we are legally required to do so.

What will happen if we change our privacy policy?

This Privacy Policy may change from time to time, and any changes will be posted on our Website and will be effective when posted. Please review this Privacy Policy each time you use our Website or our services. The date this Privacy Policy was last updated is shown below.

How can you contact us about data protection?

You can contact us:

By post addressed to: Justyna Strzeszynska Joii Limited T\A Joii, Apartment 15, Thomastown House, Spencer Dock, Dublin D01 P7N2.

By phone: Customer Services team on 01 458 6597

By email: justyna@joiicare.com

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