Where are the Patient feedback ethics?

Every year millions of patients submit online feedback to the NHS via NHS Friends and Family, NHS Choices, Care Opinion, Google, Twitter, I Want Great Care etc. The vast majority is never read or replied to, let alone acted on. Most of it is a massive waste of time. There is no consensus on either how best to collect feedback or how it should be used. This problem probably stems from the fact that it is a ‘complex intervention’ which means that it is impossible to predetermine the outcomes. But we are where we are, which is a muddle caused by being stuck on trying to figure out what it’s for and how to do it.

The separation of means and ends is the subject of a useful paper on the ethics of healthcare improvement. Ethical ‘means’ require that feedback is representative, unbiased and confidential if those giving it wish it to be. The process of giving and administrating feedback should not be too costly or burdensome in time or resources. There should be consent before giving and being given feedback but patients are pressured into giving it and clinicians are forced to collect it, publish it and submit it in their appraisals. Rarely are these basic ethical principles satisfied.

Ethical ends or outcomes include avoiding harm. Negative feedback can prejudice future care for the patient and can be upsetting, even, in exceptional cases, to the point of suicide for the recipient. Every doctor I know has lost sleep over negative feedback, but few have ever celebrated or even slept better after positive feedback. It is impossible to measure the amount of positive feedback required to balance a single piece of negative feedback. Some feedback is moderated by NHS Choices and Care Opinion for example, but even defamatory feedback left on Google or other sites can be harmful, hurtful and impossible to remove. Another ethical outcome we would hope for is that feedback results in benefits for patients, clinicians or services. But there is no consensus on what patient feedback is for, never mind what it should achieve. Some people view it as a quality improvement tool – for which there is no compelling evidence. In this respect it is hampered by inappropriate means – it is usually unrepresentative and non-specific. Others view it as a recruitment tool – like a hotel or restaurant review; in these cases the means are often manipulated and providers solicit feedback from patients who have already expressed satisfaction.

But what do patients think it is for or want it to be for? In a small study of patients who used online feedback the general view was that they wanted a dialogue about their experiences with service providers – engagement with feedback was the outcome; the means were the ends.

In the last few years, I have been a patient on several occasions on account of being accident prone and breaking bones or knocking myself out. I almost always give feedback. I see giving feedback from the ethical perspective of duty. I have never had any useful engagement. I have had my concerns dismissed and ignored. Recently after a poor experience I gave my feedback by Twitter. I was upset and in pain. I called the people in the department ‘idiots’ which looking back from my present calm, well fed, less pained perspective, was inappropriate, but at the time was a fair measure of how I felt. As a healthcare provider, encouraging feedback by social media, you have got to expect people to vent their frustrations. What follows from that is that you have to be able to respond- promptly, with an apology. I wanted the same as the patients in the study referenced above. But I didn’t get it; they did not even say sorry.

There are some good people doing good things (thank you James Munro of Care Opinion and Lee Morgan of NHS Choices). But mostly the ethics, like the feedback, is missing. And feedback is failing patients and clinicians alike.

Further reading:

What does ‘quality’ add? Towards an ethics of healthcare improvement https://jme.bmj.com/content/46/2/118

Conversations about care: interview study with patients and their family members to explore their perspectives on and experiences with online feedback about NHS services https://www.ncbi.nlm.nih.gov/books/NBK549387/

Anonymity, veracity and power in online patient feedback: A quantitative and qualitative analysis of staff responses to patient comments on the ‘Care Opinion’ platform in Scotland https://journals.sagepub.com/doi/full/10.1177/2055207619899520

Implementing online patient feedback in a ‘special measures’ healthcare organisation https://www.pointofcarefoundation.org.uk/blog/implementing-online-patient-feedback-in-a-special-measures-healthcare-organisation/

Evidence-based practice—a double standard? https://blogs.bmj.com/bmj/2019/04/24/miles-sibley-evidence-based-practice-a-double-standard/

4 responses to “Where are the Patient feedback ethics?

  1. Have always thought that feedback and consultation by whatever name, is for the same reason there is a PALS department. It is a statutory requirement. Tick box at best. I don’t know how you get those who need to improve read Care Opinion or how many complaints there are about almost exactly the same concerns that are never even read.
    Years ago in a parliamentary review about NHS complaints process ( decided it was unfit for purpose) I think it was recommended that every Trust undertook pt journey reviews and had a critical friend forum. Never happened.
    What is so,so negative is that it is impossible to give constructive critical feedback in the mode above without being told you have to raise a formal complaint.
    Which is a complete waste of public money , completely misses the point and when the majority of pts just want to help improve things for the next pt as the NHS belongs to all of us, or if hurt or even when someone dies, for someone to say the word ‘sorry’. Preferably along with ‘ what could we do differently? ‘.
    Two phrases that should never be stated is ‘moving forward’ or the absolutely sickening ‘ lessons will be learnt’.
    At the point NHS Trusts decided comms teams were normal was the no point of no turning back. Maybe in the ‘ new normal ‘ another term refuse to accept, they could be got rid of and pts and loved ones and advocates just listened to. Just once would be nice.

    • Thanks, I completely agree – what we’ve seen, and the research backs this up, is that the majority of feedback is simply gratitude, with some constructive feedback and some less constructive and a few complaints. Too few of us in primary care have effective systems for responding appropriately or even sharing feedback.

  2. Dear Doctor,

    Thank you for your article. It was refreshing and enlightening. Sadly, you are right on the button about most of it, that much of the feedback never go anywhere because the necessary departments don’t read them or care too—what a terrible waste of time and effort from patients, doctors and caregivers alike. I had the privilege to be asked to sit on boards by a caring doctor, like yourself, who valued my option as a caregiver. My late husband fell through the bureaucratic cracks and suffered un-necessary hospital visits. I have gladly given many hours of my time to young upcoming interns and medical bureaucrats, hoping if just one person hears and values our life experience it’s all been worth it. I see the system muddling to grow through its moral ethics in a sea of medical science with a poor understanding where it will end up.

    I thank you personally, for your insight has added more hope to me knowing that more people like yourself are willing to take these challenges to improve patient-provider relationships.
    You are valued.

    P.S. When, humanity steps out of its box and realizes its true identity, which is the state of infinite awareness, which many are unaware, as they are still in the box, then can we work together in love and power allowing the walls to fade away.

    Our power is NOT in our acquiescence.

  3. Thank you. As I get older and more vulnerable / injury prone, I spend more time on the receiving end of healthcare and more aware of what patients have been telling me for years. I hope that I can turn these experiences into changes that make a difference for other patients.

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