Getting involved in research into women’s health, holistically (by this we mean how health issues affect different parts of the body and mind at the same time, sometimes causing new and additional symptoms or conditions) and across the life-course is really important to us at FTWW.

This is because so many of the issues with which our members are living are often misdiagnosed or late diagnosed, or simply not properly understood, and because the treatments and services we need are either not as effective as we would like or simply not available at all.

A key reason for this is because there hasn’t necessarily been very much research undertaken into issues affecting women’s health and wellbeing in the past. This has led to a lack of understanding of the numbers affected, what the symptoms, issues, or barriers might be, and what’s needed to help support those affected.

What we focus on and why

There is evidence to show the lack of research and understanding is particularly pronounced when it comes to health issues which disproportionately or uniquely affect females, but it’s also a problem for women when it comes to health issues that can affect anybody.

Because most medical research and clinical trials have historically only included males, this has meant that women’s experiences and support needs, including diagnostic tools and treatments, often aren’t considered. This can have disastrous consequences for our health, wellbeing, even our lives. This is why FTWW continues to call for more and better research into ‘women’s health’.

Areas of research we are interested in include:

• Conditions which disproportionately affect females – things like autoimmune diseases like lupus, rheumatoid arthritis, or Sjogren’s Syndrome, and also conditions like Ehlers Danlos Syndrome, long Covid, and ME. Around 80% of people living with these conditions will be female.
• Conditions which are thought to uniquely affect females – things like endometriosis, adenomyosis, PCOS, and fibroids. These will often tend to be conditions which are hormone-driven and whose symptoms are commonly linked with the reproductive system.
• Health conditions or issues which affect anybody – these include things like diabetes, asthma, heart disease, autism, and ADHD. We’re interested in these things because evidence shows that girls, women, and people registered female at birth can experience them just as often as men, boys, and people registered male at birth but the ways we are affected are different and so sometimes not recognised, either by ourselves – or our doctors.
• Social determinants of heath – Women’s health is not only a ‘medical’ issue. There are a host of wider determinants of our health and wellbeing which lie outside of clinical spaces, and we’re also keen to see those better researched and understood, so that our experiences and lives are improved. For example, issues around hardship, homelessness, poverty, violence against women, and the workplace would all do well to be considered through a ‘women’s health’ lens.
• Social care – It’s also important that social care services are designed to meet women’s needs, so research is vital to help us better understand what they are and how to address them. Some examples might include the provision of end-of-life care, hospital discharge practices, support for women who are in insecure / emergency housing and, even the equipment that’s designed for use by domiciliary carers (mostly women)! So much is designed and delivered without actually speaking to those who are affected, so for FTWW, this is a vital first step.

Patient and Public Involvement in research

FTWW believes very strongly in enabling women themselves to participate in research, because for so long, our voices haven’t been heard – including when research teams and funding bodies decide on the projects they want to investigate. To help improve this situation, FTWW is always keen to build relationships with academic teams and funders, so that we can advocate for the importance of women’s health research and support our members’ involvement in it. This is often called PPIE, or ‘Patient and Public Involvement and Engagement’ and we regularly help researchers to make that a reality in their work.

We are particularly keen to ensure that research is inclusive and accessible, so that women who are disabled or living with long-term health issues, or face other intersectional barriers and disadvantages, are enabled to get involved and be equitable partners in the research that matters to them.

If you are planning a relevant research project, FTWW can help with the following:

• establishing research priorities with people with lived experience
• coproducing research proposals, applications, and projects
• sharing information about your study areas
• facilitating patient and public involvement
• knowledge mobilisation and evaluating impact

Find out more about how to work with us here.

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