Who’s Missing in Contraceptive R&D?
Post written by Emily Hoppes, MA, MPH, FHI 360, and @em_hoppes on Twitter
Last year the CTI Exchange launched a series called “Beginning with the End in Mind” where we examined how to best incorporate considerations for acceptability, affordability, accessibility, and equity into contraceptive R&D. The series tackled a wide range of topics from social-behavioral research to self-care; from social norms to decolonization (see the full list of topics here). And though we covered a great deal throughout the series in 2021, we feel there is a lot more to talk about. The Beginning with the End in Mind series is continuing in 2022 and one major issue we will focus on is equity.
We often use the phrase “begin with the end in mind” to highlight the importance of keeping the needs and perspectives of potential end users front-and-center as we design, test, evaluate, and introduce new products and services. But who are the “end users” we are considering? Contraceptive users are a diverse group of people that span the globe. Their life experiences, backgrounds, and cultural contexts are vastly different and their motivations for using contraceptives are complex and varied. In conducting clinical trials for new contraceptive methods, we often limit who can be involved with very strict inclusion and exclusion criteria, which are necessary in order to reduce heterogeneity or “noise” and allow assessment of the effectiveness of a product in a well-defined population. This is balanced against the need to generate data that are generalizable to a broader population and the need to include underrepresented populations in research.
To help address the gaps in knowledge about users’ experiences, social behavioral and market researchers are tasked with gathering the views of diverse groups to inform contraceptive design and new product introduction. These studies, however, can be limited as well - by access, time, and funding. As contraceptive researchers, we do our best within these constraints, but what are the consequences? Whose critical voices are we missing?
Often, the voices we are missing are the ones that have been historically marginalized, groups that have been impacted by decades of systems that oppress and ignore their voices and their needs (learn more about this in our post on decolonization here). In contraceptive R&D, have we considered the needs of all those who may ultimately use the methods we are developing? We hope to begin to better understand this question by exploring the following:
Are we considering the needs of those who are transgender, non-binary, and gender nonconforming? The language we use daily –“women’s health” – would suggest otherwise.
What about people with disabilities, who’s sexual and reproductive health needs and rights are often ignored?
How about individuals living with menstrual disorders, who are almost always left out of contraceptive clinical trials but stand to gain a lot from these products?
What about people with substance use disorders, a population with unique contraceptive needs who are rarely a part of our research?
And finally, what about young people, a group that continues to be marginalized despite the fact that they will make up a growing proportion of the population in many countries?
And amongst all of these groups, are we truly involving research participants that expand the globe? Is that kind of reach possible when contraceptive researchers and developers are a group lacking in diversity themselves?
These are some of the tough questions we hope to explore this year on the CTI Exchange in collaboration and conversation with experts. If you are interested in contributing to these conversations, please contact us or share your thoughts on Twitter or LinkedIn. We’d be interested to hear who else you think is missing from contraceptive R&D.