£25 and a biscuit: women’s health research and public engagement in the UK

Abstract

It is over a year since the Department of Health launched the Women’s Health Strategy for England and included the rally cry of “women’s voices”. However, methods and modes of the inclusion of women in their own health and health research still fall short. Patient and public engagement and involvement (PPIE) in women’s health research is considered a hallmark of a moral, ethical, and democratic society. Despite the call for the inclusion of “women’s voices” and “women’s stories”, approaches to PPIE often remain tokenistic and don’t address issues of representation, equality, and diversity or respond to wider racial inequalities in health. This past August marked the 103rd birthday of the late Henrietta Lacks who died of cervical cancer. Clones of her cells (HeLa cells) obtained without consent, continue to be used in laboratories around the world and serves as an ongoing reminder of dynamics and power in health research relationships with the public today. Historically, women have been mistreated and excluded from research and the reality that Black women in the UK remain 3.7 times more likely to die in childbirth makes the effectiveness of our research pathways critical (MBRRACE-UK, https://www.npeu.ox.ac.uk/mbrrace-uk). PPIE holds much potential to contribute to the improvement of shortcomings in maternity and women’s health, but not without deeper understanding of the ways in which engagement intrinsically, works. This article raises criticism of the current quality of engagement in women’s health research and calls for a redesign of our frameworks and the need to explore new configurations of the relationship between women’s health, research, and people.