"Concern over the use of Patient Opinion"

About: Patient Opinion

(as other),

I have read much about the wonders of Patient Opinion but would like to use this opportunity to raise a concern I have about the potential for stories to mislead.

If patients/users/carers are going to post their experiences they need to act responsibly when doing so to make sure that the story told accurately reflects the events that took place. The words chosen need to be carefully considered because they are very powerful.

I think Patient Opinion has a role to play in this. Ensuring the accuracy of a story is not the same as censoring stories. It is about acting responsibly.

If we do not all act responsibly I believe we will push the day when our health service is truly mutual further and further away because the trust that has often been hard won will vanish very quickly.

Do you have a similar story to tell? Tell your story & make a difference ››


Response from Amy Gaskin-Williams, Team member, Patient Opinion

picture of Amy Gaskin-Williams

Dear 'Small',

Thanks so much for raising this issue with us - we're happy to respond.

You're absolutely right, stories are very powerful and it's hugely important that people report their experiences as accurately as they can. We agree with you entirely, it's vital that both parties - health care staff and patients - are honest and constructive in the dialogue they have on Patient Opinion and indeed elsewhere. You're right when you say that trust is so incredibly important here. In our experience, real improvement comes from honest open conversations where everyone has the same goal - to make health services the best they can possibly be.

It's also fair to say that all the people involved in an episode of care - the patient, the health care staff, the carer, the relatives etc - will have a difference perspective, and that's ok. For example, the manner with which treatment and care is given can be as important, if not sometimes more important, than the treatment and care itself especially from the position of a patient who might be feeling very unwell, frightened and vulnerable. We believe this is one of the strengths of Patient Opinion, we allow people to say exactly what mattered to them and why. That way, staff understand how their actions and attitude (good or bad) impact upon someone's experience and recovery, how it feels to be a patient and ultimately how to best care for and support everyone.

We also agree on your point that we have a part to play here. Firstly, when people share their story on our website we ask that they agree to our terms by 'signing' their story [www.patientopinion.org.uk/info/terms]. There is an explicit expectation here that by signing your story you are confirming it to be true. We also state in our editorial policy [www.patientopinion.org.uk/info/editorial-policy2/] that we are only interested in publishing 'authentic feedback, based in personal experience' and that we remove generalisations, speculations or defamatory comments. Secondly, we read and moderate all stories before they're published. Very often, we don't need to do anything to them (and we prefer not to change them in any way if this is possible, we certainly don't consider ourselves to have a censoring role) but sometimes we do edit postings with the aim of ensuring they are appropriate and constructive. If we deem it necessary, we may also make contact with a patient for the purpose of further verification.

We hope (and believe) that like you said, most people share their stories responsibly, and only share information that they know or believe to be true. I have to say that over the last 6 years, we have had very little reason to suspect otherwise. From our point of view, everyone wants the same thing - for the NHS to deliver timely, effective and compassionate treatment and care to us all and we hope that through people sharing their experiences publicly, health care staff can hear, respond to and react to feedback to constantly improve what they do and how they do it.

Thanks again for sharing your thoughts with us. If there is a particular posting that concerns you, or you have any further questions, do feel free to get back in touch with us. Otherwise, I hope I've been able to reassure you that not only do we understand your concerns, but we're also doing as much as we can to ensure that you have nothing to worry about and that feedback is accurate and useful.

Amy, one of the Patient Opinion team

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