Whenever we develop a new A Life in a Day programme, we are always on the lookout for what our team calls “The Golden Nugget”.
Unsurprisingly, this is not a reference to a piece of metal, but more an eye-opening insight that offers a profound understanding of challenges or unmet needs of patients that many would simply not be aware of. Quite often, these “Golden Nuggets” are unearthed to us during one of our many patient interviews; an aspect of a condition that we would otherwise not know about without people opening up to us and telling their stories.
In the case of Atrial Fibrillation (Afib), the nugget of revelation was as heartbreaking as it was eye-opening.
Afib causes an erratic and irregular heartbeat and can lead to severe complications. Although treatment offers patients some control over their symptoms, they face a lifetime of worrying about when their next episode might happen. Or if they’ll suddenly experience an extreme cardiac event, or a life-threatening haemorrhage from injuring themselves whist taking anticoagulants to reduce their heightened risk of stroke.
As one patient put it, “It’s like walking around with a time bomb waiting to go off in your chest.”
This continual impact of Afib on a person is cause enough for anxiety, but the disease goes well beyond just personal health and can impact family, friends, work and so much more. We can regularly focus so much on the physical symptoms of a condition that we forget the impact it can have on mental wellbeing.
During one of our conversations a single parent described how they are outweighed by the constant fear of its impact on those closest to her.
I have four lively young kids, but they have to understand that sometimes mummy needs to lay down. When there’s something wrong, I just say, ‘Mummy’s got a heart problem’. There’s always the risk of stroke and cardiac arrest, and things like that, and I need them to know what they would need to do if they found mummy unresponsive. So, we’ve had regular conversations about that because I’m on my own, and they have to be prepared for if something bad happens.”
However, the real ‘nugget’ revealed itself as she explained the guilt she feels. For her children having to see her ill and at times incapacitated. And for potentially passing it on to them as a genetically predisposed condition.
It is imperative for anyone working within pharma and life sciences to truly understand these hidden nuggets within the patient journey outside of the immediate condition itself. In addition to providing real value for patients, addressing the holistic impacts of the disease impacts and improves the entire drug development process for both the organisation and the patients who are the end recipient.
For us all, that was the revelatory reality of living with the untold impacts of Afib.