Words by Katie Earl
The world as we know it is full of chatter; young people everywhere are crying out to be heard using a multitude of channels that as little as 2 years ago didn’t even exist. But with so much opportunity to talk, how often do we really – and I mean really – listen? How do we ensure that our voices don’t pass like ships in the night?
This topic generates lengthy and impassioned discussions at this year’s eyeforpharma Barcelona. Patient advocates address the issue of pharma’s widening generation gap and the need to facilitate meaningful conversations on both sides of the chasm. Panel member Linda van de Vliert-Duijts perfectly encapsulates the problem of young voices not being heard, as she questions: “I never quite understood why pharma doesn’t embrace more this idea of what its future patient populations are going to be.” As representatives from both camps engage in lively discussion, the conversation develops from problems
“Interacting with patients is fraught with difficulty from a regulatory perspective”, voices one audience member. This is one of the top reasons cited by pharma for giving young patients the silent treatment – by no means an insignificant barrier. Patients, in particular young patients, are by their very nature vulnerable populations, and as such ensuring that proper safeguarding regulations are adhered to is a must. Patient advocate and founder of charity Alike, Brad Gudger, agrees that it was no mean feat to overcome this hurdle, describing the regulations as “astronomical”, but it’s his belief that pharma aren’t the only ones keen to do this – in his experience the younger generation are chomping at the bit to voice their thoughts and get involved.
Interacting with patients is fraught with difficulty from a regulatory perspective
Diagnosed with cancer in 2013 and again in 2017, Brad received a bone marrow transplant in 2018. Since that time, he’s used his experiences to advocate for young people’s voices to be heard more clearly by pharma from his positions within groups and charities, including the NHS Youth Forum. He is quick to recommend such groups as the answer to the sticky issue of compliance: “Work[ing] more with charities and organisations that have that access is key. You don’t need to establish those pathways yourself, you can work with other people and on the ground organisations that do that with youth participation.”
Andrea Ruano, patient and advocate, adds to this idea, discussing the need for simplification of patient conversations with pharma. Her view is that information from pharma is often in the form of what she describes as “high-level doctor terms”, adding that “a more common language” is necessary to begin breaking down these barriers. It’s no secret that jargon is one of the foremost frustrations in the relationship between healthcare providers and their patients, marry this with restrictions in compliance and a lack of access to those with the experience you need, and it’s easy to see where pharma’s generation gap has originated.
…there is a massive issue with how do we make this more available?
That divide, however, is opening from both sides. While pharma must make the necessary efforts to create an environment in which they’re able to listen to the voices they hear, helping young people to find and engage with these channels in the first place is equally as crucial. Brad observes “I’ve met a lot of young people across the country who seem to be intimidated by it.” Why is this? Brad argues that the young people working with pharma are perceived as “an elitist group of really engaged politically knowledgeable young people. That is not the case. So, there is a massive issue with how do we make this more available?” Mieke Karremans, mother to two young children of rare diseases, corroborates Brad’s view: “I don’t know how to reach out”, she admits, imploring pharma to “Think about why you started working in pharma. I don’t think that it was because you wanted to fill your pockets […] but to help people.” The panel suggests that opening the recruitment process and the opportunities to be involved to as wide an audience as possible goes some way to solving this problem, by involving younger populations in their decision-making, pharma can make a meaningful difference to patients across the board.
There is a plethora of reasons behind the generation gap seen in pharma, and what’s clear is that urgent action is needed before that gap widens further. The answer, however, is straightforward: simplify the language, be mindful but not afraid of regulatory and compliance issues, and start talking.