Close to 1000 people living with lung conditions shared their opinions on participating in clinical trials. Striking findings make it clear that future trials must be improved!
Having placed a large focus on clinical trials for lung conditions, at the British Research Panel, we wanted to understand what barriers and challenges lung patients face. Through conducting this survey, we were able to hear directly from patients, enabling them to feel heard and empowered.
The in-depth survey received responses from 943 of our members and a selection of interviews were also carried out by those who volunteered for a phone call. Some clear findings have highlighted key concerns of lung patients and emphasised the necessity of taking steps to ease these burdens and make participation easier.
The Physical Challenges
24% of lung patients stated that their physical health limits their ability to access a clinical trial! Furthermore, 85% of these people stated feeling breathless as a reason.
Recognising that lung patients tend to be more burdened than the general population, it was worth noticing that almost a quarter of these people felt physically limited and less able to participate in a clinical trial.
Comments from one of our members, Cliff, who is living with emphysema, further backed up this statistic. “I know my limits physically and I am seriously limited because of my lung condition,” he explained.
A breakdown of these reasons can be seen below:
Transport Connections are an Issue!
It’s no surprise that feeling physically limited contributes to the stress of travelling and using public transportation. With almost a quarter of those we spoke to living in rural areas, this only adds to poorer transport connections and more stressful and exhausting journeys.
“I don’t use public transport because of my lung condition. I’m never well enough to walk very far due to my COPD, so public transport is a no go really, because you end up having to walk somewhere,” shared Carol who is living with COPD.
Cliff further reiterated the point of poor transport connections telling us that, “I don’t use public transport because I don’t have any handy. I can’t walk far enough to get the nearest bus, so public transport is impractical for me.”
The survey also highlighted that only a third of patients would be willing to travel more than one hour to participate.
The reluctance of using public transport, however, stretches beyond inconvenient journeys as it also encompasses the fear and anxiety that is still present following the pandemic.
The Fear of Covid Lingers
The fear of Covid is still present, especially for those with lung conditions, as symptoms could be far more severe. Many remain apprehensive and continue to be sceptical about using public transport.
35% of lung patients stated that they are less willing to use public transport since the pandemic and 32% of patients also expressed that they do not feel comfortable and safe using public transport.
These statistics suggest that public transport will no doubt be excluding people from participating in clinical trials and potentially increase their dependence on others for transport.
Paul, who was diagnosed with COPD in 2009 and is currently a member of the British Research Panel explained why he is reluctant to use public transport:
If I didn’t have the car, I would definitely be more reluctant to use public transport in the current situation. My biggest scare is catching covid. Anything that could affect my breathing would become a disaster for me.
It is clear that travelling to clinical trials can be daunting for those with lung conditions for a number of reasons. Complicated and stressful journeys only add to the challenges that lung patients already face and to make participating easier, changes must be made!
The Future of Clinical Trials
Hearing from our members is extremely important for us at the British Research Panel. We always aim to place patients at the centre of our focus and to do this, it’s important that they have a platform to share their voices.
Uncovering these findings emphasises the importance of change and this questionnaire delved further into some potential solutions.
To read about our members thoughts on the possibility of at home participation, the addition of services, companionship and more, take a look at our next article where we hear more specifically from our members on what they want to see improved! Read next article here!
As always, we want to thank our members for being an active part of our community. Taking the time to share your thoughts is always valued!
Tell us what worries you about participating in a clinical trial in the comment section below!
Written by:
Eloise Healey
Data analysed by Anita Toral and Eloise Healey
3 thoughts on “The Challenges of Participating in a Clinical Trial with a Lung Condition”
I did a trial 6 years ago I got 4 endobronchial valves fitted at the time could not do enough for me unfortunately they didn’t work for me and I feel now they are not interested
I have been find it hard to participate in clinical trials as they’re usually in places I can’t afford to travel to as I live in a town in between Liverpool and Manchester and even they’re difficult to get to.
I have had COPD Emphysema since 1995, and have taken part in one clinical trial with an alternative research organisation.
I have also volunteered as a research subject to other organisations to but find that the very specific criteria somewhat bewildering.