Being citizen-centred

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?