Patient Engagement: A Slow Dance?
Patients and pharma need to overcome their awkwardness if they are to work together for the betterment of all, says patient advocate Jasmine Wright
Patients and pharma are like awkward teenagers at a disco, says patient advocate Jasmine Wright. “It’s like we’re all 13 years old and the boys are on one side and the girls on the other and everyone wants to dance but no one wants to make the first move,” she says. “Sam Hariry, Novartis’ Head of Clinical Strategy for Translational Medicine said that recently and it’s so true.”
For Wright, there is an element of politically correctness. “Pharma worries about what it can and can’t say to patients, but once people just start communicating, everyone realizes it’s not that bad after all.”
Diagnosed with a brain tumor aged 17, which triggered epileptic seizures, Wright has since become a champion for patients, through volunteering and working at the Epilepsy Society UK and by training and working as a full-time nurse. Since 2012, she has also been a Patient Consultant at UCB, helping pharma to better understand her condition.
“Patients want to live and be healthy, that’s the ultimate goal,” she says. “Pharma companies want that too, but they’re also businesses, so it’s important to bring everyone together. Pharma is very good to putting a face on a condition, in bringing people in to talk about it and using stories to motivate patients. I know from my work with UCB that when you bring patients, patient charities and pharma together, that’s when change really happens.”
Yet, despite improvements in the relationship between pharma and patient organizations, Wright believed there is a “long way to go” in building bridges. “All the pharma companies are saying the same thing about the importance of talking to patients, but, in a way, they have no choice, because patients are so knowledgeable now. If pharma companies try to stay distant from patients and the patient community, it will just put barriers up, it won’t progress.”
Stigma and side effects
As a healthcare professional, charity trustee and epilepsy sufferer, Wright has a unique view on the importance of the patient voice being heard in all aspects of life. “I’ve a bit of a passion about epilepsy and the way that patients are treated, how they make decisions and the information they are given,” she says.
“Over the years, I found that some of the people making the drugs don’t actually know that much about the condition. So, for example, when they are looking at side effects, they don’t ask what it means for the patient. It’s very different when you see the information on paper and seeing an actual patient taking the pill.”
For Wright, a key personal challenge has been the stigma associated with her condition. “I was at university training to be a ballet dancer when I was first diagnosed. Within a few weeks, they asked me to leave because seizures were ‘too distracting’ for other students. That’s a huge thing that I try to tell [pharma] – it isn’t just about the condition, it’s about the impact on lives.”
Side effects are another part of the patient experience that she wants to talk about. “I openly admit that there were times when I purposefully didn’t take my medication. I wasn’t comfortable enough at the time to says that I didn’t like taking them and that I didn’t feel like I was being heard. I am always trying to say, ‘Listen to the patient and let them have their voice’. If you don’t get them involved, you could end up with nothing.”
As part of her patient advocacy, Wright lectures to medical students at UK universities, from the Institute of Neurology to the University of Oxford, and last year began work on the first known research project with a patient as a core team member.
Her insights have helped shape the study’s protocol, methodology and terminology of a UCB-run epilepsy trial that is due to recruit its first patients in Germany in the coming weeks.
“There’s work to do within research,” says Wright. “Hopefully, the project I’m involved with will show that involving patients in trials and research does work – if it was more widespread, it would be a fantastic step forward.”
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