In our recent video piece, Josie shared her experience of navigating a long and uncertain path to diagnosis- one marked by frustration, persistence, and the need to repeatedly advocate for herself in a system that struggled to provide clear answers. Her story will resonate with many, obviously more specifically in women’s health, but it also points to something broader. Because it’s not just about individuals needing to push harder to be heard, and it’s not limited to one therapy area. It reflects a more fundamental challenge in how patient experiences are captured, translated, and used in both healthcare and research. This is where experiences like Josie’s often begin to fragment. Patients bring experiences that are ongoing, variable, and shaped by their individual daily lives, yet all of these must be condensed into a short consultation and interpreted by time-pressured HCPs. Naturally, people may adapt how they talk about their lived experience, they can… -Tone down the emotional impact and use more functional language -Focus on what feels most “relevant” rather than the whole continuous experience -Simplify complex, continuous experiences into something more digestible Before you know it, a continuous lived experience becomes a series of snapshots – not because anyone is doing anything wrong, but because that’s how the system works. Patients adapt their language to be taken seriously, clinicians translate it, and the result is a slightly edited version of reality. That quiet sense of “that’s not quite what I meant” or “I did not explain that properly” is a lot more common than we sometimes admit. And It’s Not Just Women’s Health While women’s health brings this dynamic into sharp focus, it is by no means unique to it. In neuroscience, this challenge is often even more pronounced. Physical symptoms (e.g., fatigue), psychiatric symptoms (e.g., hallucinations) or cognitive symptoms (e.g., brain fog) can fluctuate day to day, may not be visible, and patients may not have the vocabulary to truly explain what they are experiencing. As a result, what is captured in a consultation may differ significantly from what patients experience over time and may miss patterns, severity, and cumulative impact, meaning the lived reality is often only partially reflected. In rare diseases, the gap can start even earlier. Patients can spend years without a diagnosis- the journey is often complex and fragmented- meaning their experiences do not fit into established frameworks to begin with. Without a clear structure or precedent, those experiences are harder to capture, track, or validate – leaving significant parts of the patient journey effectively invisible in the data. With these examples, a clear pattern starts to emerge – the more complex, variable, or less clearly defined an experience is, the harder it is to fully capture. And, as a result, the easier it is for important aspects of patient reality to be lost. The Bigger Issue Behind It All What we see in consultations is a reflection of a broader system challenge. Healthcare systems are built to capture structured, clearly defined information – diagnoses, test results, discrete symptoms. In doing so, they rely heavily on what can be observed, interpreted, and recorded by HCPs, which inevitably filters the patient experience before it is ever captured, meaning critical part of the journey are often under-represented: -What happens in the lead-up to diagnosis -How experiences change & develop over time -How symptoms truly affect daily life This becomes particularly important in research, where similar patterns can emerge, with HCP perspectives often used as a proxy for the patient voice. While valuable, this risks losing the nuance, variability, and context that define real patient experiences, and ultimately, that means insights may only tell part of the story. If the challenge is that lived experience is under-captured and filtered, the opportunity is to capture it more directly and more authentically. In practice, this means: -Talking to patients / caregivers directly -Capturing experiences over time where possible, not just in a single moment -Capturing how patients naturally describe their experience before converting it into clinical, functional, or even ‘client-friendly’ language -Making space for complexity and variability, recognising that more patient-led discussions can often reveal key insight This is the approach we take within Patient Panorama. By grounding insight in direct patient experiences, we help ensure decisions are based not on an interpreted version of reality, but something much closer to the real thing. Josie’s story highlights just how much effort patients invest in being heard. Yet even the clearest account can lose meaning once it passes through multiple layers of interpretation. Being heard is not the same as being fully understood. What Comes Next Pharma has often relied on HCPs as a proxy for the patient voice, but as AI begins to play a bigger role in research, are we at risk of amplifying existing gaps if underlying data under-represents lived experience? In our next piece, we explore what this means for achieving truly patient-centred insight. Apply Now!