One of the great things about building a platform like Patient Opinion is that people are always finding wonderful new of ways to use it that we have never thought of. Like the young couple using an addiction service who had a baby just 5 weeks old. They had had a few slip ups and used a bit of this and that other than their prescribed methadone. Terrified of having positive urines and loosing their beautiful new baby they could not ask their drug workers because then the cat might have been out of the bag. But at the same time they desperately wanted help.

The answer turned out to be sharing their story on Patient Opinion. They could see that the clinic was run by  PCAS who had a great record of responding to other requests on Patient Opinion, so they posted their story anonymously but publicly. That way they could get find out whether coming clean would end up with them loosing their baby. What is more everyone else can see the response too – which may be reassuring to other mums-to-be with an addiction problem. And one more vulnerable couple and baby helped to keep going, to not give up. 

Generic responses won’t do in these circumstances. Patients and service users need to know how this clinic, this medical director would handle the situation, not what NICE or the PCT recommends. And they will use the quality of the response to decide whether it’s to be trusted or yet more corporate speak.  Of course it’s not just substance misusers. If I had to have a coronary bypass graft, I’d want to know what the surgeon's mortality rate was and how many of these operations she did per year. But being British I’d be probably be too embarrassed to ask. But I would be happy to punt the question on Patient Opinion anonymously. And may be get an answer that helps everyone using that service.  

May be confidential conversations that can only be asked in public will turn out to be really common. And important.

We’ve long wondered whether we should allow ‘sideways’ comments on Patient Opinion. That would mean that if you saw a posting about orthopaedics in Southampton that matched your own experience in Aberdeen you’d be able add your comment to the Southampton story.  This is a classic social media approach - users comment on each other’s pages and create content in a self-generating way. It would certainly have given us many more postings and much more content so why don’t we do this?  

Up to now we have had two reasons. The first is because we built Patient Opinion to in order to help patients staff and service users to improve health services. So we wanted to keep each thread of conversation focused on what was wrong (or right) in Southampton. Allowing comments about Aberdeen might help deliver this if by linking similar problems we increased the likelihood of services in both places improving. But this seems unlikely to be the case. Even where patients  are talking about the same class of problem the answer is usually very context specific – in other words Southampton have to work out the right solution for them because, even for apparently identical problems, local answers and implementation will differ. Secondly we felt that lots of comments of ‘the same thing happened to me in my hospital’ type could turn Patient Opinion into a place to moan rather than one focused on local change. 

In the last few days three things have convinced us that we are right not to be seduced by the received social media wisdom and to stick to our current approach where single issue conversations highlight  and (hopefully) resolve particular concrete problems in specific services.First I was talking with Hugh Flouch of the excellent Networked Neighbourhood site who pointed out two things. Firstly if you allow members of the public to comment on other people's postings then things can get pretty fierce and this puts people off telling the stories they really want to tell.  After all it’s hard enough posting the story of your colonoscopy without having other members of the public comment, criticise or flame about it.Secondly have a single strand of conversation makes it much easier for the hospital to hear what’s being said. On community sites the very diversity of opinion can make it hard to tell what people want to be done differently. Finally I heard an interesting story from a mental health trust CE who said that they had had to ask the local paper to remove a story from the paper’s website. The on-line discussion itself was very positive about the trust but the fairly vigorous  hurly burly in which it was being waged on-line was clearly stressful to the people involved – many of whom had only recently left the care of the trust.   

So we’ll be sticking to single issue strands of conversation on Patient Opinion. Seems like a certain purity of purpose may be both more effective at generating local improvements and healthier for patients and staff  alike.      

Knowing the total number of people or events in anything you are trying to measure has always been important. That way you can easily work out rates, percentages, trends and all those other useful things.  So why would you ever want to do away with denominators?

But there are downsides to denominators because they focus on the overall and not the particular. It’s great to be able to have a statistical measure of quality (and this clearly depends on valid denominators as well as many other things) when we need to generalise. But what happens if it turns out that the real gold dust for quality and service improvement lies in the particular not the general? Under these circumstances denominators and all their statistical brethren may turn out to be much less relevant than we thought.

Patient stories always arise disproportionately from those who are more than averagely happy or unhappy leaving a silent majority of ho-hum experiences in the middle. So although Patient Opinion appreciates the very real value that denominators and all their ilk bring, we have also been aware of a particular kind of tyrannical thinking that says stores have to be reduced to some average numerical measure to find out what they ‘really’ mean.

So I was really interested to hear from a colleague that the highly respected Institute of Health Improvement (IHI) in the States has talked about the importance of sometimes being able to dump denominators and value stories for some of the great things that they can bring:

·         Getting at the particular rather than the general – and the particular is what really great health care is always about

·         Pointing you in the direction of solutions – a trend won’t tell you why it’s going up or down, whereas a story usually indicates what went wrong and often what you need to do to make things better

·         And stories are great at motivating staff. Much better than pie charts no matter how appetising. Stories take you right back into the reality of care and generate discussions about what might have happened and how it could be made better. And that’s the real Holy Grail – getting people to change the particulars of what they do.

Of course it’s not an either or, we still need those stats. But if you find yourself discounting ‘anecdotes’ and asking what patient stories ‘really mean’, it may be time to dump the denominator for a while and listen to what people are saying. After all no one wants to be ‘just a statistic’, everyone wants to be heard. The story, the particular, the anecdote is often the place to start if you want to make humdrum care into great care.

In my last post, I rashly challenged someone to show me online comments about care homes. I called and the internet answered, in the form the lovely Best Care Home,who show the best of care homes, by encouraging positive reviews about CQC 3star rated care homes. As Debbie says“it is about time we heard some positive news about [care homes]”.

This got me thinking… What is the advantageof having critical feedback about care homes? Or, rather, what is feedback for?At Patient Opinion we feel that our aim in healthcare is to facilitate changethrough getting just the right patient story to just the right person in theNHS. This change would not be possible if it wasn’t for the stories having acritical element. Increasingly, this is how public services are changing,through service users donating their experience, to make a difference foreveryone else. The patient is a becoming a co-creator of the service.

So, is there a difference for privatesector organisations like care homes? Both care homes and NHS hospitals areoften demonised by the media, both are plagued by funding issues, and choice isan issue for both. So… the difference? The care home sector is in constantbalance between care and money. The majority of care homes are privatecompanies, with reputations to manage. An understandable fear is that criticalpublic feedback will impact on negatively on their reputation, and then impacton the number of future residents. Maybe the difference isn’t so great then –as hospitals have a reputation to manage, and wish to attract patients.

Which leaves me wondering, what are theoptions for care homes, when faced with online feedback? The options are: sue anyonewho allows people to write critical comments, or choose to engage with theseconcerns online. It’s not an easy path to follow, but embracing thetransformative power of the web might allow care homes to discover a new placein the 21^st Century.

Last week the King’s Fund ran an interesting day on improving the experience of patients in hospital, as part of its Point of Care programme. Lots of good people with plenty of expertise and good ideas.

But one thing struck me quite hard: whenever people start talking about “listening to the patient experience”, the question of measurement comes up – and sometimes takes over. Often, there seems to be an implicit assumption that just by measuring something, we’ll create change. So let’s measure the patient experience!

I’ve got nothing against measuring things (when I had a career, it was as a quantitative health services researcher). But we’ve got to gain some clarity over what measuring is for.

Measuring is fundamentally about the past. How are things now? How were they last week? Did we improve? But nothing about measuring changes the future in any radical way. If anything, measuring reinforces a future which is similar to the past, only “a bit better”.

More than that, I’d argue that measuring is an act of power, and being measured is an act of powerlessness. By measuring “the patient experience” we reinforce, rather than question, the patient’s status as object, rather than subject. Nobody with real power gets measured.

The rhetoric of understanding “the patient experience” is about listening – but the implementation is about measuring. At the event, I asked whether there was a conflict between listening and measuring. Now I think there is.

To me, listening is an act of compassion which recognises a common humanity and, I believe, holds the potential to create radically different futures. Measuring won’t change the world: it will only tell you whether the world changed.

Unless you think differently?