Blog post and photographs contributed by Adrienne Pichon.
On June 6th, 2019, the Society for Menstrual Cycle Research hosted it’s biennial conference in Colorado Springs, CO. The conference, titled Traversing the Ridge: Connecting Menstrual Research and Advocacy, focused on “enabling scholarly and advocacy-based menstrual health and justice work to mutually inform one another“.
Fellows from Columbia University’s Menstrual Health and Gender Justice Working Group discussed the importance of interdisciplinary research in the field of menstrual studies in their panel entitled, “The Politics of Data: Promises and Perils of Evidence Driven Menstrual Cycle Research,” moderated by Working Group Director Inga Winkler. MHGJ Working Group panelists engaged in a lively discussion with the consensus that for thinking about data (and fighting pesky zombie statistics—stats with no reputable source that continue to be utilized in advocacy and programming work), menstrual health researchers must consider: Context, Communication, and Collaboration.
From left to right: Caitlin Gruer, Lauren Houghton, Inga Winkler, Vanessa Paranjothy, and Noémie Elhadad. Photo Credit: Adrienne Pichon
Noémie Elhadad: Using self-tracking technology to log data from the patient’s experience, in a detailed way that supports personal narrative. It’s also important to think about where the data comes from—is it missing data or did the person just not have anything to report (i.e., not on their period, not experiencing symptoms)?
Lauren Houghton: From the perspective of anthropology, using mixed methods approaches to understand both biomarkers but also cultural markers. Current work is using biology to look at the mechanisms for how “culture gets underneath the skin.”
Caitlin Gruer: Think about presenting data to non-data people! Be mindful of terms using, explain grey areas (in terms of confidence), and broaden the conversation to build bridges between stakeholders.
Vanessa Paranjothy: Must consider the structural problems, realities, and logistics for working with communities that are sometimes illiterate, in rural areas where some women don’t even know their ages. Work to understand their experiences and work towards the needs THEY identify.
Noémie Elhadad: People are tracking intimate details, and often no explicit contract with users. And no explanation with how we come up with these predictions, and how confident we are about them?
Lauren Houghton: We have to think about communicating confidence and accuracy, and working with users of apps to understand the menstrual cycle.
Caitlin Gruer: Share data using language that everyone can understand and will be useful! Powerful narratives, for example stories of girls’ first periods, can maybe replace the powerful and simple role of zombie statistics.
Vanessa Paranjothy: That bite-size pieces of information are useful to persuade funders and officials. But we must be careful with the ethics of working with these data!
Noémie Elhadad: Partnerships between scientists and research subjects as citizen science is one powerful use of collaboration in research.
Lauren Houghton: We have to become more literate in the menstrual cycle, to improve research. We can’t rely on decades-old cohort of data and outdated paradigms. We can’t focus on when things are easy to measure, we should focus our energy on areas where getting the data are hard.
Caitlin Gruer: Imperative to acknowledge that different stakeholders have different needs, goals, capacities, and strengths to collecting, understanding, and disseminating or using data. Must work together to bring rigorous methods together with those on-the-ground to get strongest and richest data!
Vanessa Paranjothy: As a social entrepreneur, we know our strengths are operational but also need data showing that programs are having an impact. Collaborations between entrepreneurs, academics, and other stakeholders is crucial!
Graphic recording by @ConverSketch. Photo credit: Adrienne Pichon
Working together to critically and strategically plan how we collect and utilize data and tactfully communicating research plans and findings must include all kinds of stakeholders and must be context-specific. Communication and collaboration should happen in ways that are suitable to the situation and understandable to those who you are working. Making the data more accessible and listening to the needs of the communities you work with will facilitate meaningful progress towards our shared research and programmatic goals.
For a full recap of the SMCR conference, check out this blog post on Citizen Endo’s Medium blog. The Citizen Endo Twitter, as well as the Menstrual Health and Gender Justice Working Group Twitter, also provided live-tweets, photos, and key takeaways from the conference using the hashtag #SMCR2019.