15-07-2025
Why medical research needs to be more inclusive — and what we're doing about it
The covid-19 pandemic changed many aspects of our lives. One of the most notable shifts in healthcare has been a much greater awareness of how health outcomes differ across different communities — and how our medical research has not always kept up.
Take, for example, the pulse oximeter — a device usually clipped to a finger and used to monitor oxygen levels in patients. As low oxygen levels were key concern for those with severe covid, pulse oximeters were used a lot. They were also found to be significantly less accurate for people with darker skin, often overestimating oxygen levels and potentially delaying urgent treatment.
The pulse oximeter is a poster child for the dangerous consequences of not including a diverse range of people in health research. Not only do individuals receive poorer care, but care is also unequal, and trust in the healthcare systems erodes.
This is part of a wider issue. For decades, randomised trials — the gold standard for testing new treatments — have disproportionately involved white, male, and relatively healthy participants. That's despite the fact many health conditions affect other groups in more severe or complex ways. Groups that are frequently left out include women, ethnic minorities, LGBTQ+ individuals, older adults, pregnant or lactating females and people with disabilities.
The pulse oximeter is a poster child for the dangerous consequences of not including a diverse range of people in health research.
These are called under-served groups — populations under-represented in research despite often carrying a higher burden of disease. Women, for example, have been under-represented in many trials for decades, resulting in women having more side-effects because of biological differences between how male and female bodies absorb some medicines.
Take heart disease as an example. Women are just as likely to have a heart attack as men, but women are more likely to die from one. Women are also more likely to suffer from autoimmune diseases, but research often fails to examine womne separately, excludes them or doesn't include them in sufficient numbers to say anything meaningful about potential differences. Research conducted with and on both sexes can help reduce these disparities.
This is the motivation behind SENSITISE, a new EU-funded project in UCC, with partner institutes the University of Aberdeen, UK, Masaryk University, Czech Republic and ECRIN (European Clinical Research Infrastructure Network) France. SENSITISE — short for inclusive clinical trials: training and education to increase the involvement of under-served groups — is about creating real, practical change in how we educate the next generation of trialists.
Supported by the EU Erasmus+ programme until 2026, SENSITISE includes a 12-week, open-access curriculum available online, a manual for teachers, in-person workshops for those working in clinical trials, and translations into multiple languages to ensure broad accessibility. Our audience includes not just students and researchers, but also public and patient contributors, because inclusion starts with listening to the people affected.
Our goal is simple but urgent: to make inclusive health research the norm, not the exception. This political backdrop makes the work of SENSITISE even more urgent. While parts of the world move backwards on inclusion, we are pushing forward — developing tools to help the next generation of researchers build better, fairer trials from the ground up.
In the United States, a dramatic shift in policy is under way. President Donald Trump recently issued executive orders banning diversity, equity, and inclusion (DEI) initiatives across the federal government, including in healthcare and medical research.
Frances Shiely: If trials are designed only for the majority, then under-served communities will continue to receive second-rate care, or no care at all.
The orders eliminate DEI officers, revoke protections for LGBTQ+ individuals, and direct federal agencies to redefine gender strictly in biological terms — an approach that risks excluding entire communities from equitable access to healthcare and research participation.
The withdrawal of women's reproductive rights and subsequently, women's rights, along with banning the word ''women'' from all governmental health websites is unimaginable to us here in Europe.
Even before the Trump administration came to power in January 2025, the United States had work to do to improve women's health. In 2022, maternal mortality, deaths due to complications from pregnancy or childbirth, was 22.3/100,000 live births, more than double and sometimes triple the rate for most high-income countries (Ireland is 8.3/100,000; UK is 13.6/100,000; Australia and Germany, 3.5/100,000; Netherlands 2.8/100,000).
But this hides the health inequities. For black women in the US, the maternal mortality in 2022 was 49.5/100,000 compared to 19.0/100,000 for white women. According to figures from the World Health Organization, maternal mortality for black women living in the US is higher than overall mortality in many countries, including Argentina, Egypt and Mongolia. This is not only a US issue: maternal mortality for black women in the UK is 35.1/100,000. There is work to do in Europe too.
However, the policies of the Trump administration will widen these gaps, not narrow them. The impact of this disruption of science and the subsequent health outcomes will be profound and would have seemed almost unimaginable only a few months ago. Left unchallenged, the threat of these policies spreading increases.
If trials do not include the people who have most to gain from improved treatment, inequity in health outcomes becomes a persistent feature of the healthcare system. This is bad science, and bad for society. Inclusive research isn't just about who gets invited to participate — it's about who benefits from science.
If trials are designed only for the majority, then under-served communities will continue to receive second-rate care, or no care at all. The result? Worse outcomes; widening inequality; a healthcare system that serves some, but not all.
We are at a crossroads. One path leads to a narrower, exclusionary science that leaves people behind. The other leads to research that reflects the real world and delivers better outcomes for all.
At UCC, we're proud to be leading the way through SENSITISE, equipping the next generation to build trials that are inclusive, ethical and effective. Because inclusive research doesn't just change science, it changes lives.
Frances Shiely is professor of clinical trials, HRB Clinical Research Facility and School of Public Health, at University College Cork
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