- Kate Womersley, co-principal investigator, research fellow123,
- Robyn Norton, co-principal investigator, chair of global health, founding director123
Biomedical, health and care research funders have the power to promote studies and projects that benefit everyone in society. The policies and protocols of funding organisations may seem far removed from clinical practice, but the demands made of researchers—the criteria that, when met, increase their likelihood of securing funding—influence what scientists, clinicians, patients and the public know about diseases, treatments, and outcomes. Research that does not sufficiently acknowledge the diversity of patients, such as their sex and gender, drives greater health inequities.
In 2022, the UK government published the Women’s Health Strategy for England. The strategy emphasises a “long-term aim to explore how we can encourage researchers to disaggregate research findings by sex…[to] help us understand sex-based differences in health conditions” and “close the gender health gap.”1 Cisgender women (whose gender identity aligns with their sex assigned at birth) are more likely to receive non-evidence-based care and be denied treatments, for example after a myocardial infarction,2 when compared to cisgender men. These inequalities are even more stark for nonbinary and transgender people. Integrating sex and gender into research by including representative numbers of women and transgender and non-binary people in clinical trials, and disaggregating results by sex and gender identity (analysing and reporting findings not only on the participants as a single group, but separately according to sex and gender), improves the relevance, validity, and clinical impact of findings.
Critics may argue that disaggregation by sex and gender in most instances will not show a significantly different treatment response, risk, or side effect profile between groups. That may be true. The presumption of difference where there is none can be just as harmful as assuming men and women are the same in ways that they are not. But without disaggregated analysis, we cannot know in which situations sex and gender are particularly relevant. Where differences are detected, this could be lifesaving or life prolonging. Highlighting important differences—whether physical, psychological, or social—among sexes and genders, leads to more accurate and nuanced understandings about how to provide the best care for every patient through tailored treatment pathways, as well as services which enable better access to care across diverse groups.
Other challenges to considering sex and gender in research include concerns from researchers that their research is not relevant or that they do not have the resources. But sex and gender are more relevant than many researchers realise, even in cell studies. Integrating sex and gender analysis into research as standard (with opt out possible only with a rigorous justification) is pertinent to every step of the research pipeline. As Hunt, Neilsen and Schiebinger explain in their recent international review of sex and gender inclusion policies, this ranges “from establishing project objectives (e.g., considering the characteristics of target populations and the social implications of the project), to developing methodologies (e.g., ensuring appropriate and unbiased measures and instruments), gathering data (e.g., sampling sufficient participant numbers across categories), analyzing data (e.g., considering within- and between-group differences and intersecting factors) to reporting results (e.g., considering language use and specifying how categorical data were collected and annotated).”3 Of course, these considerations take time, money, and effort. Researchers will integrate sex and gender into their work if there are incentives, adequate funding, training and shifted norms in research culture.
Our preliminary research in 2021 found that none of the top 17 UK medical research funders (each with an annual budget of over five million pounds) had a sex and gender policy in place for the research they fund.4 These large, prestigious, and agenda-setting funders are reinforcing a low standard for the entire health and medical research sector. Moreover, none of the four leading medical regulators in the UK had a sex and gender policy. An absence of a policy does not necessarily mean that these commitments are being ignored, but it does signal that sex and gender inclusion is not being prioritised. This is particularly disappointing given recent attention to the importance of sex and gender differences during the covid-19 pandemic, with men more likely to experience adverse outcomes during infection, but women more likely to suffer from long term outcomes, such as long covid.5
A focus on sex and gender in medical research funding policies is not new. The UK lags behind. Since 1994, national funding agencies have started integrating sex and gender considerations into their grant proposal processes, including the US National Institutes of Health, the European commission, Horizon 2020, and the Canadian Institutes of Health Research. These institutions also provide resources and courses to assist with the requisite upskilling of researchers. The policies and accompanying educational materials have been proven to work, as shown in evaluations of their impact. Canada recorded a nearly fourfold increase in integration of sex into research applications and an almost threefold increase for inclusion of gender over the last decade.6
UK funders have expressed concerns about falling behind this international standard, and funders and regulators must take steps to support sex and gender policies as a priority. Such policies must work for funders of all sizes—large and small, national and local. Policies must be living frameworks that can evolve as our understanding of sex and gender develops. Central to this process will be listening to the expertise of individual charitable and regulatory bodies, as well as the patients and public that fund them.
The MESSAGE project (Medical Science Sex and Gender Equity), hosted at the George Institute for Global Health in partnership with Imperial College London and funded by the Wellcome Trust, is co-creating a set of recommendations and educational materials to modernise research policy and improve sex and gender equity in UK research. Alongside intersecting policy work on other aspects of diversity and inclusion, such as the INCLUDE initiative on race and ethnicity, this is an opportunity for the UK to have a chance of returning to the forefront of international research standards on equity, diversity, and inclusion.7 If we continue to fall behind current best practice, further endangered by political controversy around sex and gender definitions, this will prove impossible.
Competing interests: KW and RN receive funding from the Wellcome Trust
Provenance and peer review: not commissioned, not externally peer reviewed.