Being citizen-centred

Question from Care Opinion

Posted by on

picture of James Munro

It was a different world when we first set out on the Patient Opinion journey, back in 2005. People told us that enabling patients to post their experiences online, in public, was impossible, wrong, or both. Some still do. But we did it anyway.

In the nine years since, we’ve seen a sea-change in attitudes - though not everywhere. We now live in a world where “online patient experience” seems to be busting out all over. There are patient comments on NHS Choices, “Friends and Family test” scores popping up on Twitter, hospital feedback apps, feedback portals, and even a “social media dashboard” offering a summary of public attitudes to the NHS in England. Phew.

And now the slightly uncertain Care Connect “multi-channel feedback pilot” too, which seems to combine NHS Choices comments with a (usually private) online channel to Pals departments.

This explosion of interest and activity around patient feedback is a good thing. Innovation, experimentation, and open learning will help us all create a future in which listening to patients and carers is normal, not subversive.

Yet inevitably, and rightly, all this activity forces us at Patient Opinion to ask ourselves difficult questions: what do we do, and why? What do we have to offer a world full of apps, FFT scores and dashboards? What do we really care about?

And the answers to these questions come down to a few simple, yet profound, principles:

  • We care about giving people a voice (not a survey), and ensuring their voice is heard (not measured).
  • We start with what story authors want, not what the health service wants.
  • We think we can help change care by connecting people, more than by collecting data.
  • And we do all of this, as far as possible, in public so that everyone can benefit.

Of course, these simple answers hide a world of complexity, dilemmas and debates. Yet they also help us define our mission, and how we believe that Patient Opinion differs from everything else we see happening.

Independent

Patient Opinion is a non-profit social enterprise. That allows us to develop and grow our service without political or organisational agendas determining what we can do.

Personal

It isn’t about data – it’s about a person, and their story. If someone responds, or a service improvement happens, or professionals are learning from a story, we want to keep the author in the loop. We want to show them – and everyone – the changes they made.

Open and inclusive

Being public isn’t just about transparency. It’s what allows the stories on Patient Opinion to be used by anyone who can help make care better. Lots of people want to help – and lots of people can help. Care providers, commissioners, patient groups, policymakers, MPs, educators, researchers... We’re built for sharing.

Learning and change

Mostly, people share their stories because they want to say thank you, or help staff make a service better for the next patient. They want their experiences to lead to learning and change. So we make sure we show who’s read each story, who’s responding, and where the change is happening.

Think global, act local

While sometimes a story might have an influence on policy, very often stories are about the small, everyday habits and processes that need to change. Usually, it’s the frontline staff who are best placed to respond to and act on feedback – ward managers, departmental heads, individual clinicians. This is an open and scalable approach to change, from below.

So, in essence, that’s what we think we have to offer. The apps and dashboards and scores may all be important – but this is different. It’s citizen-centred and effective. And we have a way to go yet.

We can’t change the world alone, but if we work together we can. Many have already joined in and are making a difference. Maybe you can too?

Response from esmiff on

While I accept that this is an interesting experiment, it is not a substitute for a real complaint and may in fact be a good method for deflecting them. 

You aren't citizen centred. You are a blatantly income focused, corporate organisation closely linked to the NHS, using daft NHS jargon, caught up in the post Mid Staffordshire hysteria.

While NHS management continues to use ego boosting idiot speak to distance themselves from the lower orders, nothing will be achieved. 

This was written by a NURSE (who happens to be head of patient services at a hospital).

All advice and treatment offered to you, including pharmacology and prescribing advice, was within the appropriate treatment plan and evidence based interventions recommended 

Response from James Munro, Chief executive, Care Opinion on

Hi esmiff

Thanks for responding. To be sure I understand the points you are making, could you clarify a couple of things?

  • What was written by a nurse?
  • What advice and treatment are you talking about?

I'm wondering if you're referring to a specific story you've read on Patient Opinion?

Of the other points you make, I can't say I agree with any of them, though I may have misunderstood you.

Response from esmiff on

It was a response to a complaint I made about a doctor, written by a nurse.  I was simply showing the jargon  he used. I am appalled at some of the (probably unconscious at times) NHS jargon used on twitter

The fact that you are profit free is basically irrelevant, you are an income focused, corporate organisation as anyone can see by exploring your website and its language.  That isn't a problem as long as you are up front about it.

It's a great idea, but absolutely not a substitute for a real complaint.

Response from James Munro, Chief executive, Care Opinion on

Hi esmiff

Thanks for the clarification - much appreciated.

I'm wondering what you mean by a "real complaint"? Many people find the NHS complaints system stressful, complicated, frustrating and ultimately pointless (see for example this NAO research from 2008).

And many people don't want to make a complaint - they just want to give feedback to help a service improve.

So it's quite good to give people a choice, isn't it? Make a private complaint, or give some public feedback - or do both, if you like.

Response from esmiff on

Thanks. I appreciate your response.

I totally accept what you say. The feedback aspect is very valid.

The process may indeed be ultimately  pointless, but playing softball isn't the ultimate  answer. I made a complaint to the GMC. They ignored me as I knew they would, but the individual concerned  was rattled enough to try and take revenge on me.  Now I will complain again.

I would like to see you make it clear that this isn't the same as an official complaint , nevertheless.

best regards

This blog post is closed to responses.