The Patient Experience Library is a UK-based online archive of research and reports focused on patient experience. They just published a report titled “Inadmissible Evidence” which outlines, in direct and accessible terms, why they think patient experience evidence is not valued alongside medical evidence. Their answer? It’s healthcare’s culture of minimizing patient accounts, complaints, and reports… essentially, a discounting of patient voice that is pervasive throughout healthcare and which they link directly to avoidable harm to patients. They point to a double standard which takes medical research seriously, while dismissing the experiences of patients as “anecdotal”.
Jennifer and Emily speak with Miles Sibley of the Library, and connect the Library’s overall mission with one of the goals of “patient engagement” here in Canada – to amplify the patient voice – and patient experience – and to have it taken seriously by medicine and healthcare.
Mentioned in this episode:
- The Patient Experience Library
- Report download: Inadmissible Evidence
- Independent Medicines and Medical Devices Safety Review (referred to in our episode as “the Cumberlege report”)
- GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research