Patients’ experiences sit at the heart of medicine, yet healthcare often struggles with how to value them. In this blog, Maya Anaokar, a member of the Patient Carer Network at the Royal College of Physicians (RCP), reflects on why patients’ accounts of illness are so often treated as ‘stories’ rather than evidence and why recognising patient evidence matters for trust, safety and care quality.
In medicine, stories are everywhere. They shape diagnoses, guide treatment, and influence outcomes. Yet when a patient describes their experience of illness, it is often labelled a patient story, and when a doctor presents the same account, it becomes clinical evidence. The information may be identical, but its perceived value changes depending on who is speaking.
Doctors are adept at integrating clinical knowledge and evidence with what patients share about their illnesses to deliver excellent, empathetic care. So why, when patients’ information is so useful, does a hierarchy still exist about whose knowledge carries more validity?
I believe this difference stems from a medical culture that creates distinct categories of knowing. Doctors tell stories too, but we give them formal names: case studies, presentations. Patients tell stories, but theirs are often described as anecdotes. Anecdotes are seen as less reliable and less valuable than clinical evidence. This hierarchy exists not because patients’ information is poorer, but because patients do not hold the same status within healthcare as professionals.
Many doctors are excellent at listening to and using what they hear from patients to provide personalised care. Research in the UK and the US shows that when clinicians are trained to truly listen to patient narratives, diagnostic accuracy improves and therapeutic relationships are strengthened. Work from Columbia University’s Division of Narrative Medicine demonstrates that patients’ stories contain unique evidence: context that biomarkers cannot capture, early warning signs that may precede measurable change, and insight into what actually matters for quality of life.
Yet despite this evidence, patients with conditions such as chronic fatigue syndrome or fibromyalgia often report having their symptoms doubted. Women’s pain is frequently undertreated, as the First do no harm – The report of the Independent Medicines and Medical Devices Safety Review report made clear in 2020. These experiences reflect a wider failure to recognise patients as legitimate sources of knowledge about their own bodies.
This failure has real consequences for the delivery of healthcare. Harm may be immediate, in the form of missed diagnoses or inadequate treatment, or cumulative, as trust erodes and frustration grows. On occasion, not valuing patient or carer information can have fatal consequences.
Martha’s Rule, introduced in April 2024, gives patients, families, and carers access to a critical care outreach team if they believe a patient’s condition is deteriorating. The rule exists because Martha Mills’ parents, Merope Mills and Paul Laity, repeatedly raised concerns about their daughter’s condition that were not acted upon. Their experience is a horrifying example of what happens when hierarchy of knowing gets in the way of listening to the patient and carer voice.
Patient stories contain irreplaceable first person expertise that improves health outcomes and experiences. They do this by deepening understanding, particularly where conditions are complex; identifying unmet needs, practical barriers to care and emotional challenges; driving improvement through feedback that supports service redesign and policy change; and making abstract concepts such as dignity and compassion concrete.
Patients and carers may lack the conceptual resources to translate their experiences into medical language. But that does not mean they are merely telling a story.
Every patient brings two forms of evidence into a consultation: their symptoms, and their account of how those symptoms affect their life. Medicine has always been skilled at dealing with the first. It is time the profession became equally skilled at recognising and using the second, and at treating what patients tell doctors as clinical evidence. When doctors listen to patients not as storytellers, but as expert witnesses, care improves and healthcare itself has the potential to be transformed.