Project Description:
Building on the success of its first phase, EndoHealth Phase 2 aims to further innovate endometriosis care by co-creating patient-centred therapeutic content. This phase focuses on understanding the informational and support needs of endometriosis patients to develop educational materials, nutrition plans, physiotherapy routines, and emotional support strategies.
These resources will be integrated into the ENDOHEALTH digital platform, enhancing patient self-management. The project is implemented at the Hospital Clinic of Barcelona, involving patients and healthcare professionals in the co-creation process to ensure the content is relevant and effective. By leveraging citizen science, EndoHealth Phase 2 aims to foster a community where patients are empowered and actively involved in their care, making a significant impact on their healthcare journey.
Project Type: Sustaining Grant
Theme: Justice and Equity, Climate
Mentor: Jane Prophet
Empowering Women with Endometriosis: The ENDOHEALTH (Phase 2) Journey
Endometriosis affects approximately one in ten women, yet it takes an average of 8 to 10 years to receive a diagnosis. Even with a diagnosis, treating endometriosis is rarely straightforward. The condition requires a multidisciplinary approach involving gynaecologists, physiotherapists, mental health professionals, pain management specialists, urologists, and more. This complexity arises because endometriosis manifests differently in each person, and symptoms often evolve over time.
With the ENDOHEALTH (Phase 2) project, we aim to empower women with endometriosis by equipping them with evidence-based resources and practical tools to manage their daily symptoms. Given the variability of symptoms, it is crucial for patients to have the tools and knowledge to manage their condition independently. Our goal is to enhance patients’ ability to take control of their health, reduce dependence on medical interventions, and maintain stability in their condition.
Transforming Care Through Co-Creation
The ENDOHEALTH (Phase 2) initiative actively involved patients in developing educational and therapeutic resources. By collaborating with women living with the condition, we ensured that the tools created were relevant, practical, and reflective of their real needs.
Our therapeutic content focused on key aspects of managing endometriosis, including:
- General information about the condition and its management
- Physiotherapy techniques to alleviate symptoms
- Mindfulness practices and guided meditation for mental well-being
- Nutritional guidance tailored to support symptom management
The Co-Creation Process
The success of ENDOHEALTH rests on its co-creation methodology. We engaged citizen scientists—patients—at two levels:
- Patient Advisory Group: This group worked closely with researchers to ensure that the patient perspective informed every stage of the project’s implementation.
- Co-Creation Workshops and Activities: Patients participated in workshops and activities to help define the content and format of the resources.
Through a series of structured activities—including two introductory sessions, two content improvement sessions, two co-creation workshops, and two follow-up surveys—approximately 75 patients participated. Together, we co-created over 50 videos covering various therapeutic topics, along with a nutritional guide and recipes. Throughout this process, we introduced the project, prioritized therapeutic education content, gathered suggestions for new material, improved the endometriosis course offered to patients, and identified the most relevant topics and formats for each type of content developed.
The Role of IMPETUS
The IMPETUS Accelerator has been instrumental in advancing the ENDOHEALTH project. The funding, resources, and support provided by IMPETUS allowed us to refine our methodologies, enhance the co-creation process, collect richer data, and improve the implementation of our work.
Next Steps
Our next priority is to integrate the co-designed content into the ENDOHEALTH digital platform following our pilot study. The ultimate goal is to make it accessible to more patients across Catalonia—and, eventually, beyond. This expansion aims to create a ripple effect, driving more informed and effective care for women with endometriosis and improving outcomes on a broader scale.
The ENDOHEALTH project represents a new era in endometriosis care—where patients are empowered with the tools, knowledge, and confidence to take charge of their health. By working hand-in-hand with the women we aim to support, we ensure that care is patient-centred and genuinely transformative.
