International Women's Day: Reflections from across Health Data Research UK

Clare Matysova is HDR UK’s EDI Programme Manager. She leads on HDR UK’s EDI strategy development and implementation, working with colleagues from across the organisation to drive cultural change and embed equity, diversity and inclusion in all facets of our activities. 

“My academic background is in gender equality as reflected in and through social policy, specifically parenting leave policies. Much of the gender pay gap emerges at the transition to parenthood, and as I explored in this podcast a few years ago, the design of parenting leave policies themselves can either narrow or widen inequalities. It is through this lens of addressing gender, and intersectional, inequalities that is imperative, in my view.”

“HDR UK has an important role not only in progressing gender equality within our research community but also in tackling health inequalities, including in thinking about sex and gender in health data research. Take brain health, for example Alzheimer’s disease. Globally, women have a higher prevalence of Alzheimer’s disease than men. Some of the differences are biological, but many are social, linked to factors such as lower educational attainment, low income, poverty, and depression. Sex and gender operate as independent or interacting determinants of health, and understanding these factors could help us target ways to prevent or delay the onset of Alzheimer’s disease.

“The Gendered Innovations framework highlights three levels of action which can be applied to gender equality in the health data science context: increasing women’s participation and visibility (‘Fix the Numbers’), transforming the systems and structures that create barriers (‘Fix the Institutions’), and ensuring that research itself integrates sex, gender and intersectional analysis (‘Fix the Knowledge’). This means questioning how research is framed, how methods capture lived experience, and even how we conceptualise sex and gender. HDR UK’s Gender Equality Plan aims to address gender inequalities across these three levels.  For example, we are proactively looking to embed a gender lens within our research and infrastructure programmes, raising awareness of developments in the sector, hosting In Conversation sessions on Sex and Gender and embedding resources on sex and gender within Futures, HDR UK’s learning platform.”

Afua Acheampong is Head of the Black Internship Programme. Now in its sixth year, the programme supports Black students and researchers to gain real-world experience in health data research across the UK. Afua oversees the programme’s delivery, strategy and partnerships.

“Historically, women have been underrepresented in research data and in the workforce, but these gaps can be even more pronounced for Black women and other minoritised groups. Through the Black Internship Programme, we’ve seen how important that intersection is. 61% of interns on the programme have been women, which highlights both the demand and opportunity to support Black women into health data research and data science careers.”

“Women continue to face several barriers in health data research, particularly when it comes to access to opportunities, progression and representation in senior roles. For Black women and other minoritised groups, these barriers can be even more pronounced as they sit at the intersection of both racial and gender inequality within science and research. One way to address this is by creating clearer and more accessible pathways in the field. Programmes like the Black Internship Programme aim to open doors for talented individuals who might not otherwise see health data research as an accessible career. Mentorship, visible role models and inclusive recruitment practices are also key to ensuring women enter the field and feel supported to stay and progress.”

“Although I have only been at HDR UK for a few months, it is truly inspiring to see the impact the organisation is making. It is encouraging to see a strong representation of women within the Black Internship Programme, across the capacity building team, where I am surrounded by inspiring female colleagues and supported by champions across the organisation. I would welcome a greater focus on areas where there are significant disparities for women of colour, particularly Black women. This includes areas such as women’s reproductive health and certain cancer outcomes, where more inclusive research and data can help improve understanding and health outcomes.”

Anne Wozencraft leads on HDR UK’s international and global partnerships. She works on enabling knowledge sharing and joint activities that extend the scale and impact of our – and our partners’ – work in health data research.

“HDR UK seeks to build equitable partnerships, and this is particularly important in the context of our work with partner organisations in low- and middle-income countries.  Together with our global partners, there’s a strong shared commitment to advancing gender equality in health data research, both to address health disparities and improve health outcomes for all.  Key to this is taking a participatory health research approach that ensures inclusion, participation, and equitable research outcomes.”

“There are some great examples that demonstrate how are global partners are progressing gender equality through their work. Through the International COVID-19 Data Alliance initiative, HDR UK  worked with the Centre for Data & Knowledge Integration for Health (CIDACS) in Brazil. CIDACS have established a Birth Cohort that enables research on how pre-natal and early life events affect health outcomes for mothers and children, and the resulting research insights have already  informed health policy and practices.

Another important focus area has been advancing gender equality and career progression in research leadership, and our partners in Africa have been leading on this through capacity building components of the Data Science for Health Discovery & Innovation in Africa and Data Science Without Borders programmes.”