People are used to the idea of evidence-based healthcare. But how often do you hear about evidence-based patient feedback? (Don't mention the "friends and family test".)
At Care Opinion we are very keen on seeing independent, rigorous and peer-reviewed evidence about patient feedback, especially our kind - online, narrative, public. We've supported the work of many academic teams over the past 20 years, and there are now around 50 published research papers, four completed PhDs, and two more PhDs in progress.
Independent research helps us think about what works, what doesn't, and why. It tells us whether we are on the right track, identifies key challenges and highlights new opportunities for creating value and impact in health care.
You probably haven't got time to read 50 papers and critically appraise the evidence relating to Care Opinion. Luckily, I've read them so you don't have to, and I've summarised many of the key findings in a few pages of hopefully readable text.
I hope you find it useful!
Care Opinion summary of the research - August 2025.docx
Online patient feedback: where's the evidence?
Online patient feedback: where's the evidence? https://patientopinion.blob.core.windows.net/profile-pictures/81ce93b1-96e9-454f-a9d0-fb73bb824a1d.jpg Care Opinion 0114 281 6256 https://www.careopinion.org.uk /content/uk/logos/co-header-logo-2020-default.pngQuestion from Care Opinion
Posted by James Munro, Director of Research & Development, Care Opinion, on
About: Care Opinion
Response from Κασάνδρα on 19 Nov 2025 at 09:55
I wonder whether there is any evidence that relatives are less willing to provide negative feedback about an institution that has a high overall satisfaction rating, because their identity could easily be inferred even when reviews are anonymised. At the same time, there may be people who would not mind being identifiable—for example, when the care of their own relative has ended but others remain at risk—yet who are discouraged from submitting feedback precisely because the review site can publish only comments that do not risk revealing who wrote them. Is there any evidence showing whether anonymised feedback, as a pre-requisite, is sufficiently inclusive of the range of information that stakeholders might wish to provide?
Response from Devastated and despondent on 25 Nov 2025 at 18:30
I agree with this comment. My husband died in hospital after a catalogue of poor care, neglect, negligence and system failures. When I posted my story Care Opinion contacted the Trust which was able to identify my husband’s case and the Trust then persuaded Card Opinion not to publish my story, citing fictitious ongoing investigations. This was after a SAIR had identified 7 failings, all of which were accepted by the Trust. I would advise relatives like me to forget about Care Opinion as the so called moderation process permits the Trusts to “circle the wagons”. If you want similar instances of poor care and avoidable death to be prevented the only effective channels are an inquest and civil litigation.
Response from James Munro, Director of Research & Development, Care Opinion on 2 Dec 2025 at 14:00
Hello Κασάνδρα
Thank you for this question and I apologise for my slow response. It is an important question as you suggest, and I am not aware of any research on this.
There are a couple of things worth bearing in mind:
First, at Care Opinion we consider two risks around anonymity: the risk of being identified by other public users of the site, and the risk of being identified by the staff who provided the care. Often it is impossible to reduce the latter risk to zero, but this does not prohibit publication of feedback. If we consider this risk is present and potentially harmful, we would normally check with the feedback author that they have considered the possibility, and ask if they wish to proceed. You can see many stories on the site where this risk is accepted by the author.
Second, even if for some reason we were unwilling to accept this risk but the author was willing to be identified, then of course that opens up other routes to feedback where identification is expected, such as a formal complaint, a letter to a senior staff member, or similar actions to ensure feedback is delivered.
Response from Devastated and despondent on 6 Dec 2025 at 23:42
Care Opinion needs to be honest and transparent. It is paid by the NHS. It therefore lacks independence and has been subsumed into the “blob”. So long as Care Opinion keeps publishing cosy little stories where all the doctors are “saints” and all the nurses are “angels”, whilst editing and suppressing the horror stories, the NHS will happily keep paying Care Opinion. It’s another layer of covering up failure. It is the opposite of an impartial independent feedback forum.