Healthcare innovation is strongest when scientific evidence is combined with the expertise of those who know healthcare best: the people who experience it.1
In women’s health, this is particularly crucial. From menopause, where 1 in 3 women globally suffer from depression,2 to endometriosis, where 1 in 6 women have had to leave the workplace due to their condition,3 the impact of women’s health conditions often extends beyond clinical symptoms to affecting emotional wellbeing, relationships, work, identity and everyday life.
Understanding these realities, and the hidden gaps they expose, requires more than clinical data alone; it requires listening to the people navigating these experiences. Clinical research is essential for understanding disease mechanisms, treatment efficacy and outcomes; however, it does not always capture the practical, social and emotional factors that influence how people experience illness or access care.4
This is where consistent, meaningful approaches to lived experience research and Patient and Public Involvement and Engagement (PPIE) become essential.
Lived experience research recognises people’s first-hand experiences as a form of expertise, using qualitative approaches to understand how health conditions are experienced, interpreted and navigated within the context of everyday life.5 PPIE provides the framework for bringing that expertise into practice by involving patients and communities as active partners in shaping research priorities, service design and innovation, rather than treating them solely as research participants.6
Together, this pairing offers the women’s health ecosystem the opportunity to look beyond traditionally prioritised clinical outcomes to better understand the wider impact and opportunity within women’s health.
The stories hidden beneath the surface
Patient involvement and engagement is a core principle at XX innovation. At the HerShe Emerald Zine Mixer, hosted by Stevii Campbell and Seven Winds CIC at Brixton House, we explored how storytelling and creative expression could support meaningful conversations about women’s health. Rather than asking participants simply to describe their health journeys, we invited them to respond to visual prompts, creating a more accessible route into sharing lived experience.
One unexpected observation quickly emerged: almost everyone had a women’s health story to tell. Once conversation began, even participants who initially believed they had little to contribute often uncovered experiences of navigating healthcare, supporting loved ones or overcoming barriers to care.
Several key themes surrounding women’s health emerged throughout the evening:
- Being heard can be a barrier to accessing care: Many participants described experiences where symptoms were minimised, normalised or attributed to other explanations. For some, repeated experiences of not feeling listened to affected their willingness to seek further support.
“Rage, anger, desperation. You have to shout to be heard. Frustrating experiences with some, not all, doctors.”
- Patients are often required to become their own healthcare navigators: Across different conditions and life stages, participants described taking on the role of researcher, coordinator and advocate for their own health. Many spoke about conducting their own investigations, relying on community knowledge and joining together fragmented pieces of information to understand their symptoms.
One participant reflected on a drawing of a broken bowl repaired using the Japanese kintsugi method: “The gold represents the research I’ve had to do myself and the women in my local community. The NHS seems put off by the number of times I come back. It feels like all my symptoms could point to one central reason, but I need a separate 10-minute appointment for each one.”
These experiences highlight a wider challenge within healthcare systems: when pathways are fragmented, the burden of coordination often shifts from services onto patients.
- Healthcare experiences are shaped by identity and context: Participants highlighted how factors including age, ethnicity, neurodiversity and representation influence how women experience healthcare. Stories included difficulties accessing appropriate information, concerns about conditions being recognised, and experiences of feeling overlooked because of assumptions linked to identity.
“Not enough examples of skin lesions… on brown or black skin.”
- Trust, once lost, can be difficult to rebuild: Some participants described delaying healthcare seeking, relying on self-management or turning towards community-based sources of support following negative experiences. This highlights that patient experience is not simply a measure of satisfaction; it can influence future engagement with healthcare systems.
While the HerShe Emerald Mixer was a single event, the consistency of these themes across different individuals and experiences reinforced an important principle: patient listening requires more than collecting feedback. It requires creating environments where people feel able to share the realities behind their healthcare journeys.
From listening to action: embedding lived experience into women’s health innovation
The insights gathered during the HerShe Emerald Mixer highlight a broader challenge within women’s health innovation: lived experience cannot be an afterthought. If healthcare solutions are to be effective, acceptable and equitable, patient perspectives must shape research priorities, service design and innovation from the earliest stages.
For different stakeholders across the healthcare ecosystem, this requires a shift in how patient involvement is approached:
- Researchers should move beyond asking patients to validate existing priorities.
Meaningful involvement means working with communities to identify which challenges matter most, which outcomes reflect real-world impact and where current evidence fails to capture lived realities. - Healthcare systems should design around patient journeys, not organisational boundaries.
Women’s health experiences frequently span multiple specialties, life stages and healthcare settings. Better understanding patient journeys, and designing around them rather than organisational boundaries, can reveal where fragmentation and barriers occur, helping healthcare systems and innovators create more coordinated solutions that reflect real-world needs and are more likely to be adopted. - Innovators should involve diverse communities before solutions are developed.
Early engagement with people who experience healthcare challenges can uncover unmet needs, implementation barriers and opportunities that may not be visible through clinical or market data alone. Importantly, our experience suggests that creative approaches borrowed from the arts and community engagement can help create conditions where richer lived experience is shared. - Funders and investors should recognise meaningful patient involvement as a marker of implementation readiness.
Solutions designed with the people who will use them are more likely to reflect real-world needs, improve adoption and create sustainable impact.
At XX innovation, we believe that healthcare innovation must be grounded in both evidence and experience. By connecting scientific knowledge with the realities of those navigating healthcare systems, we can help build solutions that are not only clinically effective, but meaningful, accessible and designed for the people they serve.
References
- Health Innovation Network (2026). Patient Involvement Impact Report. https://cdn.thehealthinnovationnetwork.co.uk/wp-content/uploads/2026/06/HIN-Patient-Involvement-Impact-Report-FINAL.pdf.
- Delanerolle, G., Pathiraja, V., Eleje, G. U., Toh, T. H., Rathnayake, N., Tweneboah-Koduah, F., Afful-Minta, N., Mudalige, T., Sun, J., Dhanarisi, J., Al-Kharusi, L., Al-Riyami, N., Mbwele, B., Madan-Aggarwal, I., Ikwuka, D. C., Wang, X., Mitra, P. K., Irfan, M., Kareem, R., … Phiri, P. (2026). Physical and mental health impact of perimenopause, menopause and post menopause in a diverse global population (MARIE Project- Global Chapter WP 2a): cross-sectional quantitative data from a mixed-methods study. EClinicalMedicine, 97, 104032. https://doi.org/10.1016/j.eclinm.2026.104032
- Endometriosis UK. (2024). Endometriosis in the workplace https://www.endometriosis-uk.org/endometriosis-workplace
- Beames, J. R., Kikas, K., O’Gradey-Lee, M., Gale, N., Werner-Seidler, A., Boydell, K. M., & Hudson, J. L. (2021b). A New Normal: Integrating Lived Experience Into Scientific Data Syntheses [Review of A New Normal: Integrating Lived Experience Into Scientific Data Syntheses]. Frontiers in Psychiatry, 12. https://doi.org/10.3389/fpsyt.2021.763005
- Robin M. Boylorn. (2025). Lived Experience. https://methods.sagepub.com/ency/edvol/sage-encyc-qualitative-research-methods/chpt/lived-experience
- NIHR. (2026). What Is Patient and Public Involvement, Engagement and Participation? – HPRUEZI. Nihr.Ac.Uk. https://hpruezi.nihr.ac.uk/public-involvement/