The Collective Experience of Illness and the Culture It Creates

We talk a lot about the need for authenticity and partnership in patient engagement. The question of ‘how do we reach this patient population effectively?’ is common in Pharma communications. Patients are more empowered than ever before, not just by the information at their fingertips but by transparent medical records, remote monitoring devices, and by the online connection to the community; connection to the collective experience. To truly engage a patient community, we need to understand the patient journey, yes, but we also need to go deeper than that to understand the true experience of the community and what it means to be part of it.

Every patient community has its own culture. A set of shared beliefs and attitudes, a common language, a perspective, moments and milestones that matter to them. In-jokes and advice shared across forums and social media. Understanding that culture, intimately, and understanding how to make a valuable contribution to it, is the unlocker to meaningful engagement.

So, why am I qualified to talk about this? Well, I’m not just strategy lead at VCCP Health, I am also a member of the Cystic Fibrosis (CF) community. CF is a lifelong, genetic condition that is degenerative and incurable. It’s also a condition that requires patients to stay away from each other (the exact recommendation is 6ft apart) to avoid cross-infection. For us, online connection isn’t just a nice-to-have; it’s essential. It’s the only way we can speak to others going through the same thing. ‘Cystics’ are a unique bunch. I’ve never known a group of people so resilient and determined to prove the statistics wrong. If you speak to doctors, they often talk about how incredibly informed CF patients and their caregivers are, and how they often become an extension of the multidisciplinary team (MDT).

Beyond the Diagnosis: Unpacking Cultural Nuances

But the cultural nuances extend far beyond the practicalities of managing a condition. It extends into every area of life. Within the CF community, there's a shared understanding of the "CF cough", “moon face”, creon shortages, in-patient life hacks, and the bittersweet joy of reaching another birthday. There’s a specific lexicon - "clean outs","tune-ups","FEV1" that binds us. There are shared heroes – researchers pushing for new therapies, individuals living against the odds. There are shared frustrations, too – the well-meaning but often clumsy advice from those who don't understand the daily realities (no yoga won’t help, trust me).

Now, consider another patient community – take individuals living with a chronic pain condition. Their culture might be defined by the constant search for relief, the validation of their often-invisible suffering, and the navigation of a healthcare system that can feel dismissive. Their shared language might revolve around pain scales, flare-ups, and coping mechanisms. Their milestones might be small victories – a day with manageable pain, a new treatment that offers a glimmer of hope.

Why This Matters: Moving Beyond Surface-Level Engagement

As healthcare marketers, we are often tasked with connecting with these individuals in a way that resonates, builds trust, and ultimately supports better health outcomes. Generic campaigns that focus solely on symptoms or treatment mechanisms often fall flat because they fail to acknowledge the rich tapestry of the patient community's culture.

Imagine trying to engage the CF community without understanding the inherent need for virtual connection or the level of medical literacy many of us possess. Your message might miss the mark entirely, potentially even alienating the very people you are trying to reach.

Meaningful engagement isn't about broadcasting information; it's about participating in a conversation.

It requires:

● Deep Listening: Going beyond surveys and focus groups to truly understand the online dialogues, the shared jokes, the unspoken anxieties.

● Cultural Sensitivity: Recognising and respecting the unique language, values, and perspectives of each community.

● Authentic Representation: Ensuring that your materials and campaigns reflect the

lived experiences and cultural nuances of the group.

● Building Trust: Showing that you understand their world, their challenges, and their triumphs.

Some campaigns that have done it well:

Teva’s “Love Doesn’t Take A Break” campaign by VCCP Health: This emotional film captures the selfless and so-often overlooked role of the caregiver, seeking to make them feel seen and direct them to support and community. Whilst this isn’t a patient community, it’s a community in it’s own right and this campaign is a powerful articulation of the high highs and the low lows that this group of under-appreciated people experience. Watch it here:

Genentech’s “Bloodless Battle” by 21Grams: Hemophilia is a condition that requires constant planning as patients seek to ensure they’ve had enough “juice” (or factor 8 to you and me), in case of injury. This planning can lead to anxieties and prompt patients to opt for more sedate pastimes. There is a huge gaming community that use platforms like Twitch to connect and meet in the virtual world, where risks of injury are reserved for their avatars. 21Grams created Bloodless Battle to raise awareness of Hemophilia and bring the community together. Watch the case study here.

“Downs Syndrome Answers” for The Canadian Down Syndrome Society by FCB Canada: The most common reaction a parent-to-be receives when they tell someone they are expecting a child with Down syndrome is ‘I’m Sorry’. This campaign from FCB Canada dug into that insight with a hard-hitting campaign that made people realise that reaction isn’t warranted or right or fair. Expecting a child with Down syndrome is as joyful as any other pregnancy. It makes you think twice and empathise with every parent who’s been in that very position. Watch the film here:

The journey to meaningful patient engagement starts with cultural understanding. It requires curiosity, empathy, and a willingness to go beneath the surface. The rewards, however, are significant – more authentic connections, stronger partnerships, and ultimately, better outcomes for the patients you serve.