King's College London

Equality, Diversity and Inclusion (EDI) is about ensuring that research reflects, respects and serves the full diversity of the populations it seeks to understand.^1,2 Its importance is rooted in a long history of exclusion in science and medicine, where groups such as women, racialised communities, people with disabilities, LGBTQIA+ individuals and those from lower socioeconomic backgrounds were overlooked or marginalised.^1,3

For decades, clinical trials were dominated by white, male participants, producing evidence that failed to account for biological, social and cultural differences.^1,3 These gaps were shaped by wider social and political inequalities, from discriminatory policies to structural barriers around who was seen as a ‘valid’ research subject.³

Today, EDI seeks to redress these historical imbalances by ensuring research is inclusive, accessible and representative – recognising how power, privilege and inequality shape experience, and amplifying marginalized voices. This commitment sits at the heart of Towards Better Outcomes for Premenstrual Dysphoric Disorder (PMDD)^4,, a research collaboration between King’s College London, The PMDD Project and Wellbeing of Women. Our aim is to strengthen the evidence base to improve policy, clinical practice and support. Central to this is transparency about how we embed EDI throughout the research – what we are doing well, what we are learning, and where we can improve. We aim to put EDI into practice in three main ways:

• Using inclusive, respectful and trauma‑informed language
• Reflecting diverse personal characteristics, and a breadth and severity of PMDD experiences in our sample
• Embedding lived experience throughout the research

A Thoughtful Approach to Language

Language shapes understanding, stigma, and experiences of diagnosis and care. To ensure our terminology is accurate, compassionate and inclusive, we co‑developed a terminology position statement with The PMDD Project and Wellbeing of Women.

We recognise PMDD as a severe, cyclical condition linked to neurobiological sensitivity to normal hormonal fluctuations. It can significantly impact on mental health, relationships and daily life. Our language aims to be validating and focused on impact rather than blame. We avoid unnecessary medical jargon, overly generalised statements, and labelling PMDD as ‘severe PMS’, which can dismiss its severity. Whilst we typically refer to ‘people with PMDD’ to be gender-neutral, we sometimes use ‘women with PMDD’ to align with policy contexts such as the Women’s Health Strategy.⁵

Ensuring Diverse Participation

We interviewed 20 people with PMDD and documented their sociodemographic characteristics. While the sample is too small to draw conclusions about different groups, capturing diverse experiences is essential to ensuring the research is meaningful and relevant. It also helps identify where future, larger-scale studies should pay closer attention to experiences across different communities. This includes recognising the importance of intersectionality, where overlapping characteristics such as ethnicity, gender and socioeconomic status can shape experiences of inequality.

All participants identified as female, were aged 23 to 46, and lived across England and Scotland. Sixteen had received a clinical PMDD diagnosis, while four self-reported PMDD. All reported mostly regular menstrual cycles ranging from 26 to 33 days. Six participants identified with a global majority ethnicity, three reported neurodivergence, and at least eleven* reported a co-occurring health condition. These included PMOS (n=2), endometriosis (n=1), adenomyosis (n=1), fibroids (n=1), OCD (n=2), and anxiety and/or depression symptoms (n=6). Four participants were parents.

We also sought to capture the breadth and severity of PMDD experiences, including symptoms, diagnosis, care and support. Five participants reported currently experiencing mild suicidal ideation, with no perceived risk or intent, while a further 12 had experienced suicidality in the past. Experiences of diagnosis, care and treatment varied considerably. Some participants received a diagnosis quickly and felt well supported by healthcare professionals. Others described long and frustrating journeys, moving between services and fighting to have their experiences recognised. A range of treatments and management strategies were reported, including symptom tracking, natural supplements, hormonal contraceptives (eg., the combined oral contraceptive pill, the Mirena coil), antidepressants (eg., SSRIs), chemical menopause (eg., GnRH therapies), and therapy (eg., CBT).

Embedding Lived Experience

Through partnership with The PMDD Project – the national lived experience PMDD charity – lived experience informs all stages of the research. Members contribute to study design, ensuring sensitivity and relevance, and project meetings provide space to reflect on our methods and decisions. They will also help interpret and contextualise findings, supporting their translation into meaningful change.

Balancing Inclusion with Practical Constraints

PMDD remains underfunded, shaping what research is possible. While we prioritised diversity, our funding only allowed us to interview 20 people and a small sample limits the lessons we can learn. To widen participation, we developed a short questionnaire for those unable to take part in interviews to share their priorities for change.

Ethical constraints also meant we could not include individuals with current urgent mental health risks, despite suicidality being common within PMDD. Most people we interviewed had in fact experienced suicidality and/or trauma in the past but were currently able to engage safely, which is more appropriate for the reflective nature of our interviews.

Looking Ahead

Embedding EDI is an ongoing process. While we have taken important steps, there is more to learn. Initiatives such as the MESSAGE project (Medical Science Sex and Gender Equity) have prompted major UK funders – including Wellcome, the NIHR and the British Heart Foundation – to require researchers to meaningfully consider sex and gender throughout the research lifecycle.⁶ This shift reflects a broader move towards more inclusive and equitable research practices.

By reflecting on our approach, we aim to contribute to more inclusive, equitable and impactful research for people affected by PMDD. We are also motivated to learn from others and would welcome further conversations on how to embed EDI within PMDD research.

 

*The actual number of co-occurring conditions may be higher, as several participants suspected they had a co-occurring neurodivergence or health condition, but this was either unconfirmed or under investigation with a healthcare professional.

References

1. UKRI (2026). Guidance for inclusive research and innovation practice. Available at: https://www.ukri.org/manage-your-award/good-research-resource-hub/guidance-for-equality-diversity-and-inclusion/ [Accessed 12 May 2026]
2. National Centre for Diversity (n.d.). Diversity 101: Deciphering EDI Acronyms and Understanding the Imperative for Inclusion. Available at: https://nationalcentrefordiversity.com/diversity-101-deciphering-edi-acronyms-and-understanding-the-imperative-for-inclusion/ [Accessed 12 May 2026].
3. Nclusiv (2025). 8 Reasons Why EDI is important in Research. Nclusiv. 1^st August [Blog] Available at: https://nclusiv.co.uk/blog/f/8-reasons-why-edi-is-important-in-research [Accessed 20 May 2026]
4. Haggar, T., & Turnbull, E. (2026). How Interdisciplinary, Policy-Led Research Can Help Us Move Towards Better Outcomes for Premenstrual Dysphoric Disorder (PMDD). King’s College London. 22^nd April [Blog]. Available at: https://www.kcl.ac.uk/news/how-interdisciplinary-policy-led-research-can-help-us-move-towards-better-outcomes-for-pmdd [Accessed 15 June 2026].
5. Gov.uk. (2026). Women’s Health Strategy. Available at: https://www.gov.uk/government/publications/renewed-womens-health-strategy-for-england. [Accessed 13 May 2026]
6. MESSAGE (n.d.). Advancing sex and gender equity in UK biomedical, health and care research through policy co-design. Available at: https://www.messageproject.co.uk [Accessed 12 May 2026]