Dean Fathers really made me think the other day. Not only is Dean Chair of Nottinghamshire Healthcare Trust and Visiting Professor at Cass Business School, he also comes from a non-NHS background and always has interesting things to say. He pointed out that the NHS was very good at sprinting and being pace setters: Cometh a new initiative, cometh the 'pilots' and 'pathfinders' and 'beacons' keen to show they are doing the business. And they often do really great work. But as Dean said, real change is about much more than sprinting, necessary as that sometimes is. More like being a marathon runner - a long, enduring, race that can still be fun and is certainly full of achievement but is never over quickly.

The gains from being a sprinter often have little to do with the core activity being promoted and much more about glitz, and kudos and brownie points. Sweet stuff, easily swallowed, done in a minute. Like all confections people can quickly feel sick, dissatisfied, as if nothing of much nutritional value has been consumed. And since change does take time, sprinters often give up long before there is much real change to show for their efforts.

I guess right now that lots of people across the NHS feel like marathon runners in a compulsory, never-ending race of Move the Deckchairs. But even though this reform-driven turmoil may feel particularly pointless, at Patient Opinion we recognise the truth of Dean' remarks. If we want to really get somewhere different with patient engagement then its going to take time. As it happens Dean's own trust, Nottinghamshire Healthcare Trust is one of the most extensive users of Patient Opinion (and happy to talk to people interested in what they have learnt). This too did not happen overnight. But 2 years in they now have 124 people on the system and have made 36 changes as a result of feedback.

So if it feels like a marathon don’t give up. Here at Patient Opinion it can certainly feel like that. After all it's 7 years since I founded Patient Opinion which in my book definitely isn't a sprint. We've achieved a lot, much of it with your help. But there's still a lot to do. So just pass the water bottle, keep going and wait for the endorphins to kick in. We'll get there in the end.

I recently had the privilege of being in a teleconference with Mike Alverson, the CEO of Kaiser Permenante, one of the biggest integrated providers of health care in the States.

One of the interesting things he said was that Kaiser now divided health care into 4 settings:

• - Staffed beds. This includes hospitals and residential settings
• - Ambulatory care by which they mean clinics, out patients, pharmacies etc
• - Domiciliary settings where the patient is looked after in their own beds
• - The web – email and skype consultations, telemedicine, appointment booking, shared decision making and other information aids and your own personal EPR

This made me stop for lots of reasons. Of course! The web *is* a major setting for health care. And one that is rapidly evolving and effecting the other three. And - just like PO - the web is an intrinsically egalitarian place to do health business.

All this is not just happening in California where Kaiser is based. Whether it is giving feedback about what happened to you via Patient Opinion, booking your own appointment on Choose and Book, using your own EPR via Patients Know Best, or exploring patient-founded sites like MoodScope, the web is already becoming a major place for patients across the UK.

Good to have some evidence about what we’ve long suspected – that patients know what they’re talking about when it comes to the quality of hospital services. Researchers at Imperial College have shown that hospitals that  rated highly by patients on public feedback sites are indeed better that those that are rated badly by them.

Not surprising but very worthwhile to have the academic evidence. Thanks to everyone at Imperial who did the hard work.

If you had to choose being able to see the name of the person who sent you an email or its title which would you choose? Well the evidence is pretty clear that most of us go for the person not the title. The messenger has always been more important than the message when it comes to getting stuff into our consciousness.

This is important when it comes to writing a good response on Patient Opinion (or any other social media platform). The more personal the responder is, the more feel they feel OK about being visible as the messenger, the easier it will for the reader to hear them. So here is a great response from Epsom and St Helier

We're glad your husband's injury wasn't serious and we'll pass your kind comments on to the team, including - importantly - the 'niggle' about having to give the full medical history twice. As you'd expect, there are procedures in place for staff to check and double-check some elements of a patient's medical history, but you shouldn't need to repeat the full history in such a short space of time.

It’s good because the writer has obviously read and appreciated the original story. And it’s written in a friendly style that makes you think there is someone pretty human at the back of it.

But it could be even better. For a start the author is simply ‘Epsom and St Helier University Hospitals’ which is about as impersonal is it gets. It would be great to know who it was who was saying this stuff – not just their job title but preferably their full name. And it would be even better if we could see what they looked like so its great when people add their photographs to responses just as Jane Danforth at Nottinghamshire Healthcare Trust does .  (it’s really easy for Patient Opinion subscribers  to upload a photo to personalise their responses).

And the worst kind of response that we see? Well that’s easy - it’s the cut and paste job from someone who doesn't appear to have even read the original posting and doesn’t give any details of themselves except their job title. Even worse is where every response from the organisation is identical so that anyone scrolling through a few can immediately see that the worst kind of ‘tick boxing’ is going on.

 

People are pretty savvy about user feedback nowadays. They are used to reading TripAdvisor and Amazon reviews. They know that some reviews will be from when the organisation – or maybe the author - was having a bad day. They read a few and come to their judgement. But the responses – well now that's real data direct from the horses mouth itself. So judgements may be quicker and harsher -  ‘Look at this - a cut and paste job for this posting that says terrible stuff happened? How heartless can these guys be?’

 On this reading the response to a posting – especially negative ones - may be more important in shaping the public’s perception of a trust than the critical story itself.

It's interesting to see the line of what is ‘permitted’ by NHS trusts around social media shifting. Here’s the Chaos and Control blog – beautifully written by Little Feet – about how her un-named mental health trust prevented her from blogging during a recent stay as an in-patient. But what exactly was the problem that so bothered the mental health trust?

'Given that I wasn’t blogging about other patients and when specific staff were mentioned, they were anonymised, I felt this approach a bit heavy-handed. However, their argument was that patients who were more unwell than me could blog anything, regardless of the truth'

Yes, well that’s true. In a world where everyone has a public voice – i.e. can blog or tweet or post on Facebook – all sorts of people are now able to say all sorts of things about all kinds of institutions. And so? Does that make the sky fall in? No. Is it a good thing or a bad thing? Well I guess that depends on your perspective. But the one thing that is absolutely clear is that public voice shifts power to the citizen. This kind of heavy handed approach by the trust will inevitably back fire. Just ask Mubarak.

Of course some blogs and Facebook entries will be offensive, untrue or malicious (none of which is in anyway true of Chaos and Control). But on the other hand as Claire an OT who is one of our favourite NHS bloggers (@ClaireOT)  cogently argues  self expression is part of getting better, of moving up Maslow’s hierarchy. From a therapeutic point of view, all other things being equal, blogging and using social media should welcomed by mental health teams.And surely it’s all useful data – either about the staff, the service, or occasionally about the person who posts

So a blanket rule of ‘Don’t blog!’ is in our view both misplaced and impractical. What is happening here is that the NHS is (slowly!) learning the realities of the new world of social media. Most of the time social media comments should be welcomed. Sometimes they should be ignored. Occasionally something needs rebutting. For a good guide on all this take a look at the useful  US Air Force process chart on how to respond to blogs which we found on Jeremiah Owyang's great blog 

From our experience of moderating thousands of stories about mental health services we know that occasionally postings will raise issues of clinical governance – for example people expressing suicidal thoughts or threatening harm to staff. But in principle this has always happened and trusts should have procedures to deal with this.The fact that it is now happening in public on-line may be uncomfortable but does not change anything much. At root trusts need to think about whether they are exercising a legitimate duty of care - or protecting themselves.

And if Little Feet would like to use Patient Opinion as a platform to talk about her experience of services we would welcome her story.