Why We Should Work Together: Partnering With Patients to Close Gaps in Underdiagnosed Female Health Conditions.
Author: Halle Deakin, MSc Student in Community Health Sciences; Cumming School of Medicine | Editors: Romina Garcia de leon, Tashi Stampp (blog coordinators) Reviewer: Emily Anne Opala, Msc.
Published: June 26th, 2026
Lived Experience as Expertise
As readers of women’s health blogs, we understand that many gaps still exist in how to best diagnose, and care for females living with polyendocrine metabolic ovarian syndrome (PMOS), formerly polycystic ovary syndrome (PCOS), endometriosis, premenstrual dysphoric disorder (PMDD) and more. Female health is persistently underfunded and under-researched, with those living with these conditions facing greater challenges as diagnosis may take up to 15 years. In many articles, this process has been described as an uphill battle, where females commonly face neglect from care providers, dismissal of symptoms and harmful stigma from those who should be helping them. Unfortunately, the challenges do not end here: after receiving a diagnosis, many find themselves with limited guidance on condition management.
Those living with these conditions are experts in the care journey, the shortcomings of the healthcare system, and existing knowledge gaps. They understand these experiences better than researchers ever can and they have a stake in the research being produced; they should have equal say in how it’s conducted.
Females with lived experience of these conditions are positioned to contribute their experience as expertise within research teams, ensuring research is responsive to their own and their greater community’s needs. With so much more to understand about these conditions, it is essential to prioritize the immediate needs of those affected, by representing and valuing their perspectives as equal to researchers.
An Outdated Approach
Females have been historically excluded from participating in research and it was not until 1993 that they were even able to participate in clinical trials. Since then, the involvement of females with lived experiences in research has largely been limited to the role of ‘participant’, where they have little control over how the study is conducted. In this traditional approach, despite being the ones affected by research, they have had little say in the questions being asked, how data is analyzed or how these results are shared. Collecting data from females living with PMOS, endometriosis, PMDD, and other under-researched conditions is an important step in learning more about female health. However, supporting their perspectives as study designers, data analysts, and knowledge sharers is equally important for shaping meaningful research.
A New Beginning
Patient-oriented research, research that engages those with lived experience, is becoming more recognized as a way of improving care outcomes. Yet, in a disturbingly familiar pattern, there are limited examples involving females living with these conditions as partners in research. It is time for this mindset to shift from treating females as passive research participants to active collaborators.
As patient partners, those living with these conditions are treated as equal members of the research team and contribute their valuable lived experience to inform all stages of the research. Clinicians and academics need to acknowledge the value that females with lived experience bring to research teams and that this expertise is as important as research credentials and skills. By becoming patient partners, these individuals can represent voices that typically go unheard and can drive meaningful change in research that aligns with patient priorities.
Patient advisory councils are an example of how patient partners can collaborate with researchers and clinicians to incorporate their insights throughout the research process. Through these, they can build community among females with similar lived experience and work together with the research team to drive change in the research that affects them.
Spearheading Change
Although few, there are research groups with established patient advisory councils that are setting an example of how to support the lived perspective in research for these conditions. Some examples include The Endometriosis and Pelvic Pain Laboratory and The EMBRACE Women’s Health Research Lab, which are changing the traditional narrative through their initiatives. Many patient advocacy groups for these conditions are also doing impactful work to increase awareness of existing gaps. Still, there is a need for more groups that unite clinicians, researchers, and people with lived experience to tackle these problems together.
Improving Care Together
Collaborating with females with lived experience of PMOS, endometriosis, PMDD, and other conditions as partners in research will ensure that research is more responsive to these communities. Their involvement will make sure that the limited funding for female health is spent answering meaningful questions that will improve the patient experience rather than merely bolster researchers’ CVs. Importantly, many patient partners also experience improved care outcomes by working alongside others with lived experience, feeling empowered, gaining control and developing new skills.
Moving forward, females living with these conditions should be encouraged to join research teams and help shape research that fills the gaps they have experienced first hand.
If you are a female with lived experience, a friend or family member of one, a researcher, or a clinician, it’s time to advocate to engage those with lived experience in future female health research.
