“Be heard” says the tagline on Patient Opinion, an independent, not-for-profit feedback platform that gathers patient stories to improve healthcare services. In two words, this tagline sums up one of the most common and enduring criticisms of healthcare: patients are not being listened to.
Patient Opinion is doing something about this. They ask healthcare services to respond to patients’ stories, take action where necessary, and report back on what changes were made as a result. But before any of this can happen, every story requires some degree of tinkering.
Let me tell you about ‘Dave’. Dave is a pseudonym for a participant in this study. He shared a story on Patient Opinion UK about the care his father received at ‘Smalltown Hospital’ (another pseudonym). Dave wrote that nurses were unaware his father had two strokes.
Before it was published, Dave’s story was carefully edited by Patient Opinion’s moderation team. His first sentence, “This hospital has been awful for a very long time.”, was deleted. A passage written in capitals was changed to lowercase, an exclamation mark was taken out, and scare quotes around the word ‘specialist’ were removed. Phrases like “I felt that”, “I found this”, and “I do not believe” were added to make it clear that this was Dave’s opinion.
The process of moderation is all about risk management. From a legal perspective, this work is necessary to ensure that Patient Opinion is not liable for defamation. From an ethical point of view, however, moderation raises concerns around authenticity, representation, and power, and leaves us wondering what it means to “be heard” in healthcare. (In an email to Patient Opinion, Dave said his story “was diluted” to produce an “ambigious” version that “lacks any impact”. He asked for it to be taken down.)
There’s more to this matter than just moderation, though. Postings on Patient Opinion are used internally by healthcare organisations in a variety of managerial routines. In the Director of Nursing’s office at Smalltown Hospital, postings are summarised into a single line in an Excel spreadsheet. From there they are turned into data from which graphs and tables are made to compare departments and measure staff performance.
What strikes me here is how hard it is to resist institutional pressures to simplify and quantify. Healthcare organisations are searching for ways to become more story conscious, but it’s precisely this narrative work that is usually incompatible with standard accountability procedures. Stories like Dave’s are chopped up and excavated for formalised knowledge about a given practice, and then reassembled into a format that can be processed as efficiently as possible. And so we end up at the same point as before, where the voices of patients and their families are lost in a pool of numbers.
Of course, this is not to say that all healthcare organisations operate this way, or that feedback platforms like Patient Opinion are unable to initiate change, because they do (read this, and this). Rather, I am asking us to consider what place stories have in the notoriously data-driven healthcare industry. When it comes to using patient feedback for quality improvement, how can we redesign the dynamics of dominant quantitative accountability procedures to make room for embodied experiences of care – be it stories or art or poetry or photography – which are not accountable in that way?
Ziewitz, M 2017, ‘Experience in action: Moderating care in web-based patient feedback’, Social Science & Medicine, vol.175, pp.99-108.