May 03, 2024
In the UK, we know that some people who are diagnosed with pulmonary fibrosis (PF) face unfair and unequal access to care. Poverty, discrimination, stereotyping and systemic racism are all factors which negatively impact the experiences of people from different backgrounds. Sadly, for people living with PF, the story is no different.
For example, the experience people from some ethnic groups have in accessing PF healthcare can be very different to White people.
- PF research in general is underfunded so evidence does not exist on the same scale as for other health conditions. However, evidence suggests that some ethnicities in particular face extra barriers to accessing treatment and care.
- In a recent report, 65% of Black people reported experiencing racism when accessing healthcare.
- Some ethnic groups are also more likely to experience poverty and to live in areas with high pollution.
- Evidence is emerging that racial bias is being unintentionally built into the technology that monitors health. This includes some tools used to monitor breathing. Some devices may give a false reading for some darker skin tones, showing oxygen levels are higher than they really are. This is a problem because there is potential for it to prevent people from getting the right treatment at the right time, affecting health and life expectancy.
What are we doing about this?
- We are listening to and are being shaped by people with lived experiences of these issues to make change happen.
- We are changing the way we work to be as inclusive as possible, so everyone has access to our support services and information.
- Our movement OneVoiceILD, has been set up to influence decision makers in the NHS and government to fight for the best level of healthcare for everyone. We will be listening to and reflecting the experiences of patients from all different backgrounds across this work.
- We aim to bring together researchers with patients from different backgrounds, to help ensure that the tools and medicines currently in development work for everyone in the future.
- Influencing decision makers to improve diversity and inclusivity in research into PF .
If you are interested in being part of this work and sharing your experience please email involvement@actionpf.org