Healthcare professionals are regarded as practicing evidence-based medicine, with their decisions firmly rooted in data and objectivity. But like everyone else, doctors are human and subject to the influence of habit and the comfort of the familiar. Even the most compelling data is not necessarily enough to shift established practices, especially when those practices are regarded as ‘good enough’. As a result, many clinicians stick with what they know—relying on familiar medications and protocols not because they lack data, but because they lack the time and headspace to thoroughly vet new options. This isn’t a criticism; it’s a reality of the pressures and demands of modern medicine. But it does mean that, sometimes, we need more than data to inspire the changes required to improve outcomes for patients and society.
Enter patient stories. While clinical data is essential, it often feels abstract and impersonal. Patient stories, conveying what a patient should generally expect from a treatment, bring data to life, providing a human context that can be far more compelling. Hearing directly from patients about their experiences can create an emotional resonance that numbers and charts simply can’t achieve. For instance, consider a young child who no longer experiences nausea after changing to a new medication. In a clinical paper reporting a Phase III trial, this would be just a contributor to a number in a table reporting a side effect profile. But what if a common problem for children receiving the previous medicine was vomiting at school with subsequent social isolation. This isn’t just a side effect; it’s a significant burden that impacts the child’s mental health and social development.
Such a narrative highlights the real-world implications of clinical decisions and highlights the importance of enabling clinicians and other stakeholders to consider more fully the individual patient perspective. The narratives don’t replace evidence; they complement it, providing a fuller picture that includes both the clinical and human dimensions of treatment outcomes. Empathy, far from undermining objectivity, enhances understanding and leads to better-informed decisions grounded in evidence.
Some would argue that clinicians routinely ask how patients are getting on with their medicines as part of shared decision making. However, through advisory board meetings with patients, I’ve learned that there often isn’t much time for in-depth discussions, and patients frequently tell doctors what they think they want to hear rather than the full truth. This means doctors often don’t get a complete picture of what life is truly like for their patients. They need to rely on being guided more by measurements and data, with little time available for questions about patient well-being. This approach, while necessarily efficient, can mean the clinician is unable to gain a deep understanding of how patients are really doing. Patient stories can fill this gap. They can uncover the real-world implications of clinical decisions. These narratives reveal the hidden burdens of diseases and treatments that may not be apparent from data alone.
Having produced patient films, written patient stories, and recruited patients to speak at internal company meetings and external customer meetings, I have seen firsthand how such media can effectively convey patient experiences. Films can visually and emotionally engage the audience, providing a powerful narrative that stays with viewers long after they’ve seen it. Written stories allow for deep dives into patient experiences, offering detailed insights that can be revisited and reflected upon. Live patient testimonials at meetings have proven to be popular and impactful, bringing the patient perspective directly to the forefront and developing a deeper connection with the audience. I have presented patient stories in advisory board pre-reads to prepare participants’ minds, I have involved patients in meetings to tell their stories to rooms of clinicians, and I have created films of patients to share with congress delegates. Each of these formats has been able to effectively illustrate the real-world impact of treatments, making clinical data more tangible and relatable.
Moreover, with the rise of the healthcare consumer and the increasing interest of regulatory and health technology appraisal bodies in patient perspectives, it is in the interests of pharmaceutical companies to routinely plan and build a library of patient stories as part of their asset development. Such a library will be invaluable, ensuring that the patient voice is clearly heard and considered in any evaluations.
In summary, while data and evidence remain the bedrock of medical practice, the power of patient stories should not be underestimated. These narratives provide the emotional and practical context that can bridge the gap between clinical evidence and real-world practice. By embracing the power of patient stories, whether through films, written narratives, or guest speakers, it is possible to bring data to life, creating that emotional resonance that the data alone cannot achieve.
Second, cultivate a culture of empathy and evidence. Patient stories should not be an afterthought but a central component of medical communications both within the company and outside. They remind us of the human side of medicine, ensuring that patient perspectives are always front and centre in clinical decision-making. By prioritising these narratives alongside clinical data, we can enhance our understanding of the full impact of treatment choices, ultimately leading to more compassionate, informed, and effective medical care.
Finally, plan how to integrate these narratives into medical communications. Consider how to use the narratives to complement and humanise clinical data, making the evidence more relatable and impactful. Patient stories can serve as powerful motivators for continuous learning and adaptation, encouraging healthcare professionals to stay current with new treatments and guidelines. Plan the formats and narratives that will best achieve that.
About the author:
Paul Riley, MBA, PhD, CMgr
Paul Riley has over 20 years of experience in the pharmaceutical industry in roles including medical science liaison, medical advisor, and medical affairs manager. Paul is a consultant at Glasshouse Health, where he works with pharmaceutical and medical device companies globally, helping ensure healthcare technologies reach their clinical and commercial potential.
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