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International Clinical Trials

Customer First

Tell us a little about the Atrial Fibrillation Association (AFA)?

Trudie Lobban: The ASA provides information, support and education on atrial fibrillation, as well as raising awareness of what is the most common heart rhythm disorder and a leading cause of stroke.

How is the AFA involved in clinical trials?

The association often sends out surveys to our members, and we get feedback from millions of atrial fibrillation patients, their carers, and clinicians involved in research. From this, we provide data for clinicians. We also reach out to our members, who sometimes volunteer to take part in clinical trials.

What is the biggest challenge in your role at the moment?

Talking to policymakers – the payers of healthcare services. As Founder and Chief Executive Officer of the AFA, I have to get them to understand atrial fibrillation, which is a ‘silent condition’, yet one that affects millions of people around the world.

Another challenge is to ensure that there is funding available for clinical research – and also funding to provide education to the patients and their families, as well as to healthcare professionals. Education empowers people, and it helps them to better understand and manage their condition.

What are the main motivators for a patient to join a clinical trial?

The main one is sheer frustration that the treatment they are being offered is not working. Many patients still feel exhausted, drained, frightened – or it takes a long time to be diagnosed and they are not being offered any treatment at all. So it is often out of pure desperation that patients put themselves forward for trials.

What do you think pharma needs to do differently in running clinical trials?

Pharma has become so strict with its compliance and adherence that it has become a kind of ‘mystical industry’ that nobody really knows much about. I think more openness is needed – pharma companies talk about transparency, and are very strict with themselves, but they are not even allowed to speak directly to patients, whereas device companies are. For example, patients like to pick up a pacemaker and understand how it works. I have even toured pacemaker factories along with some patients. If something similar could be done with pharma, it would help patients – and the public – to understand just how much investment goes into bringing a life-saving drug to market.

Sadly, pharma has, in the past, got itself a bad name – and changing that situation will take time. Involving the patient more would make a huge difference, and help take away fears and suspicions about the industry.

Medical companies seem to think their customers are the doctors or the healthcare providers – but the patients are the customers. In any other line of business – selling food, clothes, cars or houses – you involve the customer. You look at what they want and expect, you get feedback on how to improve. There is no reason why patients should not be asked for their feedback as well.

At the upcoming PCT Congress, what will those attending take away from your session?

They should have a better understanding of the patient perspective as the end-user and the customer.

What are you most looking forward to finding out more about at the event?

I would like to understand more about how and when people are approached to become involved in clinical trials, and the criteria. As mentioned, we should be looking beyond compliance and perhaps even challenging pharma by asking: “Why don’t you involve the customer?” I know it’s because of the compliance, but maybe compliance is wrong.

Trudie Lobban will be giving a keynote presentation, ‘A patient’s story: What happened when I enrolled in a clinical trial,’ at the Partnerships in Clinical Trials Congress 2013 in Vienna.

Visit for more information about the Partnerships in Clinical Trials Congress 2013

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