On the latest episode of our Talk of Hope podcast, we’re talking all about clinical trials with former clinical trial nurse, Ann Doran.
Here’s 5 key points covered in this episode:
Providing future care
It’s safe to say, clinical trials are crucial for the advancement of treatment. Every treatment option we now have for lung cancer has come from clinical trials.
Many people who take part in clinical trials feel an enormous sense of pride because they are playing a part in shaping how we treat lung in the future. Their experience could help people gain access to better treatment as well as potentially giving themselves more time with the people they love the most.
Safety first
A common question about clinical trials is ‘It is safe?” After all, it involves testing a new and potentially unknown treatment.
The simple answer is yes. It’s not like in TV dramas like Greys Anatomy where the results are the most important thing. In real life, patient safety is paramount.
Clinical trials have to meet the most robust and ethical standards. All healthcare professionals involved in trials undergo a certificate of training. Trials must follow an ethical framework. There is safety committee so if there are any issues, these are reported within 24 hours. The committees are made up of legal people, healthcare professionals, religious people and lay people so all opinions and voices can be heard.
The primary focus is for the participant to be safe, well and have a good outcome.
However, there is of course the risk of side effects. At the start of the trial, participants will be given a list of all potential side effects. This is a legal requirement but can be quite overwhelming and scary.
As with standard treatment, everyone has a different reaction. The same is true of clinical trials. Should you experience any side effects, these will be managed by your nurse and the clinical trial team and should they become too severe, your safety and health will be their first priority.
Nurses want to know about side effects
It is vital to share any side effects you experience with your clinical trial nurse. The purpose of clinical trial is to improve the treatment and care of lung cancer so any changes – both good and bad – provide vital information and data.
Some people may be concerned about telling their nurse about side effects. They may be worried that this could jeopardise their place in the trial.
That is not the case. Your nurse needs to know about any side effects so they can firstly, do what they need to do to make sure you are looked after and the side effects managed and secondly, document the side effects to help shape knowledge and understanding around this treatment.
You are not restricted to local clinical trials
It is important to know that people can take part in clinical trials that are running outside of their local area. All trials will have a budget that can help with travel, accommodation and food costs for participants. This is not done as an incentive, only to make it as easy as possible for participants to take part.
There can be some restrictions on taking people outside of the local area. It will depend on the aim and purpose of the trial and if these variations could impact on the results. For example, some trials may focus on more rural communities so may not be able to include participants from urban areas.
You are in control
The nature of clinical trials means the participants physical and mental wellbeing are the most important aspect. This means they are in complete control and can leave the trial at any point.
It’s really important to know that no data is ever wasted in a clinical trial so even when a person is unable to continue, their experience has still provided important insights into this potentially new treatment.
You also have the ability to find a clinical trial yourself. We recommend using the following three websites to search for UK and global trials. You can also speak to our nurses about finding a trial. That way you know you have done everything you can for yourself or your loved one.
https://bepartofresearch.nihr.ac.uk/
https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial
https://www.clinicalnet.com/