INVISIBLE: A powerful film on under-representation of different ethnicities in health research

It’s a well-known issue that diverse ethnic groups are not represented in health research. But a team of medical charities and people with lived experience is driving change in this area by raising the voices of people from diverse ethnic groups through a powerful film called INVISIBLE.

This can mean results from research, such as new treatments and technologies, may not work for everyone, which can in turn lead to poor health outcomes in groups of people that haven’t been involved in the research.

What is the INVISIBLE project?

A community engagement agency called Egality led a team of medical research charities to co-produce an emotive and inspiring short video with eight people with lived experience through two community groups. This project aims to increase the number of people with lived experience from diverse ethnic groups who are actively involved in health research. In the film, called Invisible – Be Visible!, People with lived experience of various long-term health conditions perform a spoken word piece written by Duke Al Durham, who lives with type 1 diabetes (T1D).

How can this project benefit our community?

Dr Paidamoyo Katsande, who is a type 1 diabetes researcher and member of our Insight & Experience panel said:

”As a Black woman and a researcher in type 1 diabetes, I have witnessed first-hand the vital importance of representation in health research. Minority communities are often overlooked, leading to healthcare that isn’t as inclusive, safe, or effective as it should be. Projects like INVISIBLE are essential for shining a light on these disparities and fostering more equitable healthcare systems. I’m proud to support this initiative and truly believe it will make a lasting impact.”

Why should people with lived experience be involved in research?

People living with a condition should be given the opportunity to actively and meaningfully contribute towards research into their condition. At Breakthrough T1D, we involve people with T1D in all stages of research to ensure their voice is heard within designing, developing and advising T1D research. Involvement should be inclusive, diverse, accessible and should value all contributions. By doing so we can improve research quality and value, ensure patient safety, maximise research impact and improve health outcomes for all people.

Sharing to raise awareness

The INVISIBLE project focuses on why diversity in the people involved in health research matters. We hope by sharing the film we can inspire individuals from diverse ethnic groups with T1D to get involved in research. As well as show researchers why it is important, and why they should increase their efforts to make their involvement activities as inclusive as possible.