Speaker
Spotlight

In our next Speaker Spotlight, we speak to Catherine Meads, Professor of Health at Anglia Ruskin University. She will be speaking at Silenced data: The politics of health research in the USA on Tuesday 17 March, which explores how the current political climate in the USA is impacting research into the healthcare needs of diverse and marginalised communities. Catherine will discuss the suppression of LGBT+ health data, including the removal of government web pages and the disappearance of research records from prominent institutions.

She will be joined by Dr Pam Knight, who will explore the parallels in ethnicity and health research, highlighting how systemic barriers affect data collection and visibility.

What happens to communities when vital research simply disappears from government and academic records?

When research data about minority communities is absent, the assumption is that the health of the minority is no different to that of the majority. New findings that challenge such assumptions are not made visible through the usual dissemination channels. So people from minority groups largely remain invisible to local and national officials who make decisions that directly affect their safety and wellbeing. Knowing that there is a problem is the first step in trying to address it.

Also, there is no imperative to collect any data that might disprove that assumption, which then reduces the possibility to obtain research funding. But more importantly, it significantly hinders the ability of advocates and policymakers to press for needed policy changes, which creates a cycle that can harm people from minority groups. When vital evidence gathered through research disappears, we lose the momentum of research translation into practice, making it unlikely that that such evidence will ever result in tangible clinical benefits.

There are many examples of how things have gone wrong for diverse populations because of using outdated practices, wrong assumptions, prejudices or lack of knowledge. A well-known example of invisibility arose during the COVID-19 pandemic, where the BBC showed photos of the NHS workers who had died, and it became obvious that people from ethnic minorities were dying more than expected. If just their names had been shown, the disparity would have remained invisible. That realisation led to investigations as to why.

Also “If you don’t count us, we don’t count”. There is a general feeling that when diverse groups are ‘the minority’ and not counted, they are therefore somehow less important, less valued. Consequently, their needs are not prioritised when it comes to research funding.

One example is Sickle Cell Disorder- despite the devastating effects on predominantly Black people, school children tend to keep quiet about their diagnosis for fear of the stigmatisation associated with it. If we improve people’s knowledge and understanding of this condition, we can change their attitudes and false assumptions of people who have it, and this can lead to them having better experiences at school and better health outcomes. Less research has been conducted in Sickle Cell than comparable conditions such as haemophilia or cystic fibrosis[3], and people with the condition have had less access to specialist services.

Why are marginalised communities repeatedly left invisible in US health research?

The US President’s Advisory 1776 Commission report from 2021[4] rehearses the statement from the US Declaration of Independence that “all men are created equal.” But then it minimises efforts to address discrimination, dismissing them as “group rights” that run counter to equality. The notion is that DEI efforts are discriminatory as they preference some groups over others.

However, what it ignores is that not everyone gets equal access to resources in life, or treatment, or have the same care experiences. The socioeconomic determinants of health are real, and people from minorities frequently have poorer experiences and outcomes. We know this from, for example, research after the COVID-19 pandemic, which revealed that Black people weren’t dying because they were Black but because of structural and systemic unfairness, and were more likely to have had pre-existing disadvantages.

There seems to be a fundamental misunderstanding DEI purpose- not to preference one group over the other but to promote equity of opportunity - that people have fair opportunity to survive; live happily; be free from illness and disease and to receive fair healthcare experiences. Some people have more privilege (socio economic capital) than others, putting them at greater advantage, whilst others have less privilege, and are therefore disadvantaged, AND sometimes there are structural and systemic barriers that prevent people from having a fair opportunity.

This can be described by the following cartoons. In the left cartoon, the systemic barrier is the fence stopping the shorter person seeing the game. The middle cartoon shows additional efforts helping all to enjoy the game equally well, and the third shows how all can enjoy the game if the barriers are removed.

References:
1: https://www.nature.com/immersive/d41586-026-00088-9/index.html
2:https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthinequalities/bulletins/allcauseandcausespecificmortalitybysexualorientationenglandandwales/march2021tonovember2024
3: https://nhsrho.org/news/sickle-cell-patients-face-unequal-care-new-report-highlights/
4: https://trumpwhitehouse.archives.gov/wp-content/uploads/2021/01/The-Presidents-Advisory-1776-Commission-Final-Report.pdf