Women’s reproductive health in research: A discussion with the US health team
[Women’s Health Series]
As part of the Women’s Health Series, we reflected that one of the main issues creating a barrier to positive change is a fundamental lack of conversation and open discussion. Reproductive health, namely menstruation and menopause, has suffered stigma and shame caused by this lack of discourse.
Whilst things have improved in recent years, we wondered whether the pharma and healthcare research sectors have done enough to consider, examine and shine a spotlight on reproductive health.
We sat down with the women of the US Health team to have an open discussion about the topic and uncover their observations in how far we have come in better understanding women’s reproductive health, as well as what more we can do as healthcare researchers to tackle ongoing challenges.
Below is an extract from that conversation (edited for brevity and clarity) which included the following team members:
- Lucinda Darby (moderator)
- Jillian Leites
- Katherine Binns
- Alethea Leung
- Kayleigh Rossmueller
A note on language
We use the term “women” in this article to refer to those assigned female at birth, but we acknowledge that gender exists on a spectrum. This article explores how female reproductive health (menstruation and menopause) is considered in medical and health research.
Firstly, for wider context, how do the US and the UK compare in terms of their approach to women’s reproductive health?
Jillian Leites: Well, I think the biggest difference – and it crosses all aspects of Healthcare – is just universal healthcare that the UK has that the US doesn’t have, and that just permeates every aspect, especially for Women’s Health.
Katherine Binns: And if we think about this more broadly even than just UK and US, cultural nuances have a big impact on how people think about and pay attention to Women’s Health, how women think about their own health.
And all of that layers on complexity to the point that Jillian was making – is that access is so very, very different. Regardless of if you’re just focusing on US or UK, or even more broadly with other countries as well. And even beyond the question of if you can you afford to pay for the doctor’s appointment, access also means do you have to worry about taking time off work? Do you have to worry about childcare?
Alethea Leung: Yeah, I completely agree with what Katherine’s saying. I think the differences in Women’s Health services go beyond differences between country and region. It’s the kind of things that span globally, such as access that we’ve discussed, but also education and awareness. And that will vary by culture, by country, by region, by socioeconomic status, ethnicity. And I think that’s both the reality and also the challenge to women getting good access to reproductive health services.
Kayleigh Rossmueller: Definitely. I think the education part has a huge role to play, doesn’t it? Depending on as well, what type of school you attended. Because I know that quite often, education around reproductive health can be so different, which I only discovered when I discussed my educational experiences with others and realised they learned so much more than I did.
The education I received felt disconnected. Like the ‘tampon in the glass of water’ lesson felt totally disconnected from biology lessons, where we were taught about the uterus and that kind of thing. How those two concepts actually related to one another – you never got that step – I had to rely on my mum to connect those dots!
We also have to think about different backgrounds and culture as well – like how willing family is to talk to you about your own body. This can all potentially prevent people from having that understanding and knowing if something’s wrong or not.
I think I saw in the news the other day that something like 1/3 of women weren’t going to their cervical smears in the UK between the ages of 18 and 30? And part of that was down to self-consciousness – thinking that they might look strange and that they’d be mortified in front of the nurse. So if we had an understanding from a younger age that everybody’s body looks different, and it’s not something to be embarrassed about, perhaps we wouldn’t have that disconnect. People would feel comfortable enough to check something that’s potentially very serious.
Lucinda Darby: I was really interested to hear what you said about the difference you discovered, in terms of what you learnt at your school versus other people. What were those differences?
Kayleigh Rossmueller: I think I’d only been told the worst things that could happen. Like what sexual health condition you could contract. I don’t know that menstruation was ever its own lesson at my school, other than something briefly touched upon in biology.
Lucinda Darby That. Blows. My. Mind!
Alethea Leung: I think what struck me when I was growing up – like in school learning about puberty and menstruation – was that we weren’t really given much in terms of support either. So, as well as it being very science focused, we weren’t really told who we could turn to for help, or to get more information beyond our immediate friends and family.
So for me it was always my mum or my girlfriends that would help each other out to understand what’s going on and discuss things like period pain. But I would never have thought that I could speak to a nurse or a doctor. So that was very striking for me when I was looking back on my experiences.
Katherine Binns: And it’s not just about our knowledge gaps, but also about the knowledge gaps that healthcare providers have.
So, for example, I remember doing research with healthcare practitioners prior to the launch of the HPV vaccines. And it really unearthed some important knowledge gaps that – in order to adequately educate women about the link between HPV and cervical cancer and understand how a vaccine might help – was going to require different types of education for different types of healthcare providers, in addition to education for women themselves.
So it can often be a quite complex puzzle to get everybody fully informed, to have the right kinds of conversations.
What considerations should we bear in mind when thinking about the role of reproductive health in research?
Alethea Leung: There’s an importance of being holistic when we’re doing research with women. Women’s experiences with reproductive health and access to health services is very different and quite wide-ranging.
So it’s important to make sure that we understand aspects like, “What has been your journey been up to this point? What have your experiences been? How did you feel about this then? How do you feel about it now? Where do you seek support?” Ultimately I think if you do that, then you’re going to have a much better understanding of the cultural context, the various touchpoints and of women’s unmet needs.
Katherine Binns: There are also implications for the methodology you use for research, especially if you are dealing with sensitive information. Women might not be comfortable talking even with other women in the room. So you need to think about the cultural nuances between doing one-on-one interviews versus groups and how do you design your guide to be culturally sensitive so that you’re not inadvertently stymying the conversation.
Alethea Leung: I agree – it’s so important that we bring empathy into the conversation, and also in the way that we design our research, as people who write surveys and questionnaires and guides and have conversations with clients.
And I think it’s also up to us to challenge the client as well at times. We need to challenge them to ensure the right approach, guide them on how to ask the right questions and deploy the right techniques to be true to women’s experiences and needs.
In clinical trials, is it standard practice to consider the impact of treatment on menstruation or bleeding if the participant is post-menopause, as a potential side effect?
Kayleigh Rossmueller: The main nuance that comes up is pregnancy. “Is this a person who could get pregnant?” is the main concern. I’ve seen some clinical trials that require people to be on birth control to avoid falling pregnant during the course of a clinical trial. Or to avoid adverse effects of how a drug may affect someone in a pregnancy. I don’t know that I’ve ever seen menstruation or bleeding considered.
Jillian Leites: I don’t think it’s a standard practice to consider menstruation in studies and it probably should be. For example stimulants, depending on where you are in your cycle, have different efficacy levels due to varying levels of estrogen and therefore dopamine. So if you have ADHD and you take stimulants such as Adderall or Vyvanse (Elvanse in the UK), then if you’re not on birth control your menstrual cycle will impact the efficacy of your medication.
But for the most part, I think women’s cycles are just ignored in clinical trials, when they shouldn’t be because it has such a variable impact on what you’re doing.
Another example of this is that a lot of nutritionists and personal trainers will recommend that the way you exercise should be coordinated to the phases of your cycle – because the fluctuation of hormones has a huge impact on your physiology and well-being.
Katherine Binns: We’ve made a step forward in women being included in clinical trials, however if you look at the COVID vaccine trials as an example – disaggregating the data to understand ‘are women’s experience is different than men’s?’ – it doesn’t happen! And collecting the data on things like impact on menstrual cycle doesn’t happen either. So there is more work to be done beyond just ticking the box on having women included clinical trials.
Alethea Leung: I think the historic gender disparity in clinical trials which have underrepresented or actually just disregarded side effects that affect women (such as the impact on menstruation) has had significant consequences. Now we have these products in the market that are perhaps not benefiting women as much as men.
There’s also potential misdiagnosis or under diagnosis of conditions because women weren’t the ones seen in early clinical trials. And I think pharma now have quite a lot of work to do, to understand how women are experiencing these products and what more they can do to support them, because there was such a lack of that understanding at the beginning.
How should Pharma companies consider women when it comes to messaging and communications?
Katherine Binns: Well, it’s interesting, because we were talking about this amongst ourselves last week. If you think about communications directly to women, say for example around disease education, there’s a number of different things that you need to consider.
What’s the tone? Is it the right tone? For example, I recall a campaign a number of years ago related to breast cancer where the tone was felt by women to be too optimistic, given where they were. So, if you want to instil the idea of hope, you just need to sure that it doesn’t seem unrealistic.
Or thinking about how you conceptualise an education campaign, making sure it isn’t seen as trivialising, because that happens all the time to women. Doctors, friends, family, even women themselves trivialise their own problems and if it’s seen as trivialising in an education campaign, the message is not going to come through.
Linking back to the conversation we were having earlier around access and culture, I think it’s important for pharmaceutical companies to at least consider non-traditional channels to communicate. Because in the context of women’s reproductive health, a lot of what most of us learn happens through non-traditional channels. It’s not from your doctor, it’s not a support group – you might not even know how to find one. So it’s important to think more expansively about where you can reach women, in a way that can be impactful, via channels they trust.
Where do you think the opportunities are for Pharma to better support women and their health?
Kayleigh Rossmueller: I think ensuring that their voices are heard is going to be one of the major things to counteract the male lens through which we see everything.
And just trying to “right the historical wrongs” to increase people’s awareness and understanding. For example, “If you’re experiencing a heart attack it might not actually look like this for you because it manifests differently in your body…”
One of the areas where I’ve seen that done well recently is breast cancer. For men, there’s been a really good campaign in the UK where it states “Men, you too can get breast cancer. And this is what it looks like in you…”
So it would be amazing if we could see that for women, where there are conditions where women have historically been underrepresented or the disease manifests differently. Especially when it comes to neurological conditions. Things like autism and ADHD take ages for women to get a diagnosis simply because it doesn’t look the same, and we’ve been viewing it with the lens of quite often young boys, not even adults.
So, starting with education campaigns would be a huge step forward.
We’ve seen it with endometriosis. I know near where I live, in the Trafford Centre, there’s a huge endometriosis campaign, which makes me so happy because when I was 18, I’d never heard of it before! And a couple of my friends are sufferers of endometriosis, and they’d never heard of it, and had a difficult diagnosis journey. So having this awareness now so that the next generations and even people who’ve previously gone misdiagnosed or not diagnosed until now can have that spotlighted and have the symptoms listed somewhere that is really accessible to them. I think that’s one of the biggest things – and pharma has that kind of reach where they can do impactful education.
And it also creates a stronger connection when the patient knows that the pharma company cares for them enough to do these education campaigns, I think that helps brand building and relationships to their end customer.
Lucinda Darby: Another point re. education is that it’s not just young women that need to be educated or women of any age. I think a lot of men have a massive, massive knowledge gap. You might have seen the funny but worrying videos on TikTok and Instagram with men being interviewed on the street things and asked questions like “how do you think a woman pees while she’s on her period?” which, in fairness, is designed to trip them up, but many men don’t have any understanding women’s anatomy.
I remember at school we were put in two separate rooms, so that girls were taught about periods, and I actually have no idea what the boys were taught…! But there was no crossover and therefore there’s a huge gap in knowledge.
Which I think actually adds to the stigma and the shame around these things because there’s a lack of understanding and education, often on both sides. Obviously that observation is amongst the general population, and you would hope that healthcare providers understand women’s anatomy. But there’s a bigger education piece to be done for sure.
Katherine Binns: Well, one of the great apocryphal stories around this was when women were first admitted into the NASA space programme. And when the first woman astronaut went to space, they were worried that, “oh, what if she starts to menstruate?” So they sent 100 tampons, thinking “Will this be enough?”
Lucinda Darby: How long was she in space, though?
Jillian Leites : Not long, I don’t think.
Katherine Binns: Right. She was gonna be there for, like, a couple days. So they gave her 100 tampons.
Jillian Leites And everyone was like, “that’s an absurd amount!”
Kayleigh Rossmueller: Yeah, it just goes to show that there should be universal education on this topic!
Another thing is bringing more of a holistic view into research and thinking about the wider patient ecosystem. For example, when considering the impact endometriosis has on someone’s life, the kind of pain you experience if you are an endometriosis sufferer (which Kate Baker wrote about here) impacts mood so much – because pain is so linked to mood and self-image. And not just that but the ability to access work, education, and carry out regular day-to-day life.
So I think that’s another area again where Pharma can help create the bigger picture, because we often look at research as one piece of the puzzle, but we need the holistic view to consider all aspects of what is going on in a patient’s life.
We would like to thank the US Health team for taking the time to discuss and explore this important topic.
Having these conversations and normalizing these issues is a small step we can take to protect and preserve the dignity of patients so that we can ensure better outcomes for women. Whether that’s us as researchers or our clients as those in the Pharma and Healthcare sectors, we can all play a part in driving that positive change.