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Frustrated, overlooked and excluded: how people with disabilities have felt during the pandemic

Disability in clinical trials

The COVID-19 pandemic has brought the lack of diversity in clinical trials to the forefront of everyone’s attention. We’re concerned that the word diversity is being used to consider ethnicity alone. Diversity encompasses gender, age, socioeconomic status, sexual orientation and much more. And one group that’s often overlooked is people with disabilities.

People with disabilities are often excluded from clinical trials due to protection and ethical reasons. This underrepresentation has led to scrutiny about how effective and safe treatments are for people with disabilities. Additionally, people with disabilities face many challenges in everyday life, and those with physical, sensory or learning disabilities face barriers when it comes to using health services. This translates to clinical trials, which may not be set up to be inclusive. So, to gain more insights into how these people are feeling and what we can do to help, we’ve conducted social listening to assess what conversations are taking place around this topic.

Our analysis revealed that people are frustrated by the lack of understanding and awareness of disabilities. A common conversation topic was concerns about a post-lockdown world and the implications for people with disabilities, such as fewer public toilets being open for those with Crohn’s disease. People also feel that the healthcare system helps others, at the expense of people with disabilities. For example, a number of existing, approved medicines have been re-directed for the treatment of COVID-19. This has led to medicine shortages, at the hands of those who need the treatments for other conditions. Although people appreciate the urgency and severity of the pandemic, they are passionate that it shouldn’t be prioritised at the expense of those with disabilities.

When it comes to clinical research, people are also very dissatisfied. People on social media have expressed disappointment in the lack of diversity among clinical researchers and those working at study sites. Similarly, people are concerned about the language used by researchers, such as using the word ‘handicapped’ in the wrong context. This highlights the need for cultural safety training within clinical trials. Cultural safety refers to the ability to understand, communicate with and effectively interact with people across different groups. We’re determined to see the greater introduction of cultural safety within clinical research, and it could improve the number of people with disabilities who take part in clinical trials.

There is without a doubt negative sentiment around this topic, with many people with disabilities feeling overlooked across different parts of healthcare, from medicine availability to clinical trials.

The full report can be accessed below.

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