Fireside chat: building multi-country coalitions in endometriosis research

EPHect has launched a new initiative: Fireside Chats, wihch provide an opportunity to chat with those who have first-hand experience, for everyone to pick each others' brains, and to learn from one another.

In this first EPHect Fireside Chat, endometriosis investigators Idhaliz Flores (professor at Ponce Health Sciences University, Puerto Rico) and Mira Mousa (assistant professor at Khalifa University, United Arab Emirates) share their experiences of how to build multi-country coalitions in endometriosis research. 

Key messages

• When commencing a research collaboration, ensure that you involve all stakeholders from the beginning: researchers, clinicians, policy makers, patient organisations, those with lived experience, etc. This will ensure that all perspectives and the necessary expertise from different regions are included from the start.
   
• Identifiy passionate, driven, and commited collaborators, who are willing to get involved from the start to work together.
   
• Leverage the fact that there are validated data collection tools available in 19 languages, and bear in mind that those with endometriosis are often very willing to fill in lengthy questionnaires because it is their opportunity to be heard - and to contribute to research. 
   
• Be aware of the potential gaps in health literacy among those you investigate and, when using the EPHect tools, be sensitive to cultural differences and adapt the language and structure of the tools accordingly (there are published papers on how to culturally adapt and implement the EPHect EPQ).
   
• Four new tools with standadised operating procedures for the use of experimental models in endometriosis research were published last week.
   
• When we all collaborate, and are able to compare results with one another, we are also able to affect national/regional policy with regards to guidelines, policies, and funding for women's health initiatives and endometriosis in particular. 

Provide us with feedback

If there are topics you would like us to address in our Fireside Chats then please send us an email.