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.

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.

How far can you push the Patient Opinion model? We've been thinking about this a lot as we get ready for our MyPublicServices Conference that we are putting on in November. We know that its surprisingly easy to extend it to other countries (providing you have great local people to work with!) and our Catalan, Spanish and Italian versions should go live soon. But what about extending sideways to other sectors within the UK? What about Social Work Opinion? Or Education Opinion? Well, quite a few people are trying to do this and we wish them well as we have no ambition to extend beyond health and social care. But we do have some thoughts about this extension?

First off does it make any sense to have a single system of feedback? Apart from convenience of accessing and promoting a single site (which can be handled in much better ways than creating a single portal) does the citizen gain anything else? Well, yes, if it means they can tell complex stories involving multiple providers, issues and places in a way that makes sense to them. But to do this well the system needs be able to handle each bit of the journey in an appropriate way. Commenting about your social worker for example probably raises issues particular to this field that need to be handled sensitively.

Which begs the question what is the nature of ‘appropriate’? Is there anything we learnt from Patient Opinion about what ‘appropriate’ means for web-based platforms?

Roughly speaking public services can be divided into those that are transactional and those that are based on some kind of personal relationship. The touchstone here is whether you, as a user, have a relationship with at least one or two of the key people providing the service. FixMyStreet and its generic descendents FixMyRailways, FixMyRoadworks and FixMyFlyTipper are all clearly transactional. Social Work Opinion, Pupil Opinion and Probation Opinion would, like Patient Opinion, be at the relational end. Our guess is that it’s much easier to build a generic service for transactional services than for those based on relationships.

This is only in part because the ethical, legal and business knowledge needed to generate income from relational feedback is highly specialized. It’s because users want a relationship. They want to feel heard by their doctor, they want a response from their teacher, their probation officer. They want to touch, feel, affect the relationship they already have. That’s why they are posting their story in the first place.  Just providing a place that does to the professionals they have been dealing with my cathartic to the angry and the frustrated. But it does a violence to the majority of people who come on sites like Patient Opinion and I Want Great Care.

Complicating all this further is the rhetoric of the web. Built around consumer sites both the rhetoric and the formal research about web users tends to concentrate on desire driven events. Health care, social work and the criminal justice tend to be fear and anxiety driven. Just think about the difference between sharing the story of your wedding on FaceBook or the story of your haemarhoidectomy on Patient Opinion. Get the picture? So the standard script about web sites – that use matters, that hits and clicks are the only currency – just doesn’t work on for many public services. Not only does this mean that the standard advertising driven models don’t hold up (what services would you advertise on Social Work Opinion?). It also means learning what drives users to use the site has to be discovered. It doesn’t just fall fully formed off FaceBook or out of the Twitter tree.

So where the beef here? Maybe that a generic model is practical for transactional services but that for relational services it’s better to build a flotilla of sister organisations who each specialize in a sector, manage it’s particularly risks, and who know and love it enough to generate income. With the whole lot held together by a loosely evolving software systems that have enough inter-operability to provide seamless storytelling to users. Which is more or less the direction we’re interested in taking Patient Opinion. So if there are any budding fellow travelers out there who want to colonise a new sector, come and talk to us!

The Patient Opinion team has been out and about this week – James, Kate and Miriam in Manchester with our Northwest subscribers and Paul, Tim and Amy in Maidstone and London training mental health trusts to use our new mental health services. It was great for us to meet all the people who came to these events but the high points were two barn storming presentations by people from outside the PO team.

In Manchester we had Maria talking about her experiences using Patient Opinion as head of services at 5 Boroughs Partnership Trust. Maria’s enthusiasm for the way that PO helped her track what is happening on the front line across all her busy areas of responsibility, and to use this feedback to help staff actually make the changes that service users were talking about, clearly impressed the other managers at the meeting.

Meanwhile down south Jason told the story of how as a volunteer at Sheffield’s Primary Care Addiction Services he had been helping service users get the changes they wanted. The first big issue coming up on user’s stories was frustration at not knowing how long they had to wait for their appointment – if they went out for a smoke would they miss their appointment? Why were people going in before them? Just giving out more information in reception quickly cooled the tempers that had often been fraying.  As Jason said: ‘I never lack from a cup of tea from the receptionists now!’

Once this was out of the way and users began to trust the independence of the PO service and the willingness of PCAS to listen, more interesting uses quickly emerged. Having found a way of asking questions anonymously and getting sensible answers back, service users have begun to ask the clinical questions that they have been afraid to ask. ‘We’re still users and have a young baby. How can we get help without any fear that social services will come and take our baby away?’

So what have we learnt? That you need three things to really begin to make PO fly:

·         a steady stream of postings,

·         willing and enthusiastic managers,

·         And involving lost of staff over among enough time for them to really begin to experience the power of users’ stories to help them deliver better services.

It’s also clear that using volunteers like Jason is great way to do this, especially for groups like substance misusers who are skeptical and suspicious of services. 

And if you do this, then your staff and your users will not only tell you useful things, they’ll probably start using the service in ways that you (and us at PO) never even expected.

Oh, and one last thing. If we want to really convince busy people from the service of the benefits of Patient Opinion then we’d better use as many service users and front line managers as we can to speak for us as they are so much better at convincing other managers and clinicians of the benefits of using Patient Opinion than we at PO Central will ever be! So thanks Jason and Maria!

Watch.UsNow is a great video about how the web lets people take things into their own hands and just get on organise stuff. There’s Clay Shirky, Charlie Leadbetter, William Heath, Lee Bryant plus mums from netmums and many others all talking very good sense. Well worth a quick watch (and thanks to Jonty  at Demos's Progressive Conservatism project for bringing it to attention).  

But looking at it I realised that Patient Opinion doesn’t quite fit. And the reason is that we don’t ‘do community’ in the same way that netmums or Facebook or Couch Surfers do it. For them the community is the whole point – they are about giving people a place where they can do what they want in ways that they are passionate about. This is what Web 2.0 has been all about up to now and it’s releasing a wave of mutual help and support that will, for sure, change the world in just the ways that the Watch.UsNow video explains. 

You can easily imagine similar communities building around Patient Opinion with people discussing services for endometriosis or hospitals  in Wolverhampton. And of course we’ve talked long and hard about whether Patient Opinion should do this. Our worry is that such groups would quickly turn into moaning arenas or gravitate to the ‘let’s go beat them up’ approach. But perhaps we’re doing everyone a disservice by such assumptions and we should trust people more and go test it out. 

But there is also another reason why we don’t quite fit into the standard web 2.0 model and that’s because we’re focused on changing services whereas most of the standard bearers for  ‘web 2.0 is a revolution’ are focused (rightly) on their members interests. So netmums is about mums not primarily about services for mums. And Couch Surfers is about finding congenial  people to stay with for free in new cities, not about improving travel services.  

Patient Opinion together with sites like MySociety are doing something different – we’re trying to engage the service, to get busy staff to act in new ways. This is very different from setting up a community of users ‘outside’ the system and who are all too easily perceived by staff as being critical. So it is possible that vibrant communities of users might indeed make our  core task – improving services – harder not easier. 

This isn’t an either/or of course – sites that focus on mutual support or benefit and sites that want to change the system are both really worthwhile. But Patient Opinion’s task of changing the system by engaging many thousands of staff as well as  tens of thousands of users, is distinct for two key reasons. Firstly it creates a different sort of public value to groups focused on mutual support. Second if we are successful, it opens up different revenue streams beyond the old stalwart of advertising that everyone and his dog is trying to make a living from on the net. After all if we could help patients and carers initiate 10,000 service improvements a year this will create significant value for the NHS. If we could find ways to extract this value and feed it back into more patient-initiated change - now that would be exciting. Then there really would be money in them there pills!

Lots of organisations that we work with welcome Patient Opinion. But some see web-based feedback more as a trial than an opportunity.  Who needs web-based feedback when you've already got surveys, CQUINS, hand helds and your own internal system of PALS and complaints? The very things that appeal to patients and the public about Patient Opinion – that it is easy to use, free,  visible to everyone,  independent, impossible to control, and full of  anecdotes – are exactly the things that these trusts and managers fear.

Understandable but the problem with looking at the world (and Patient Opinion) in this way is that it assumes that because NHS organisations have been able to control feedback in the past they will still be able to do it in a world that is being re-shaped by forces much wider than the NHS, or government policy. We are used to running an NHS in which patients interact on our terms, use our complaint procedures, fill out our questionnaires – when now, out there on the web,  everyone  is already saying exactly what they think on their own terms.

Losing control of these internal procedures feels uncomfortable but actually represents a great opportunity. As a trust it means that something that was scarce and expensive – patient feedback – has suddenly become cheap and plentiful. Yes, that means news ways of working. Yes, it means that we have to respond in public rather than use complaints procedures that are bureaucratic, private and easier to control. But it also means it is now really easy  to involve every single team in the trust in hearing what patients are saying, reflecting on what it mean for good practice, and entering into a public conversations about what they are going to do to improve things.  And that has to be a change for the better.

We're recruiting - again.

Recently we promoted Kate - the lynchpin of posting moderation - to head up our new pilot project on web feedback in social care (residential homes, to be precise). So now we have to replace her.

We're looking for someone enthusiastic, sociable, and not too scared of the web.

Here's the job description. Get in touch if you're interested.

As we start to receive mental health postings from around the country we can look at areas that are of particular concern to service users and carers. Although for some, crisis services have been really useful and effective, for others there have been real problems getting access at the point of need. Check out these postings below, and have a look at what is on the Patient Opinion site and if you are able, contribute some feedback of your own.

• Crisis team access
• Lack of support from mental health services
• Eternally grateful to excellent crisis team

We started Patient Opinion because we thought that it would be great way to aggregate and direct the collective wisdom of patients and carers. Then we realised that it was better to think of Patient Opinion as a way to create thousands of transparent, structured conversations between patients and providers with us acting as a giant switch board getting stories and responses to just the right people.

But sitting in my GP’s chair, a final lesson emerges in all this: The power to tell and re-tell the story of illness is part of how we all make sense of the meaningless depredations of disease. Telling your story on the web offers, for those that want it, new ways to do this: Our son was just twelve days old when he died. Throughout this distressing time the staff on the Neonatal Unit were outstanding. They treated him with dignity throughout his short life..…  the staff made us feel that his life was as significant to them as it was to us. Nurse Jan made a print of his feet and hands and put them together in a card with some clippings of his hair. On Father’s Day there was some chocolate for me that was labelled from him. (Full posting) The telling of such stories, the ability to speak even whilst grieving, has therapeutic benefits.

Add the promise that by sharing what you have learnt you might be able to help improve a small part of the world for everyone and the sick are offered that most precious thing, the possibility of themselves being needed for their insights, of giving some thing back to the community of the well, just at the moment when they feel at their most powerless. That the new forms of web-based voice can go beyond the passivity of suffering, and begin to make sense of what had previously been meaningless is perhaps their greatest promise:  ‘Mum’s illness was awful but we helped change things for everyone!’

The act of helping others is consoling because it reconnects us at a time when we are at our most alone. For the first time improving services can  be driven by the intrinsic desire to find meaning within the experience of disease.  Multiplied by the hundred thousand as only the web can, these transparent, directed dialogues move us beyond exit and voice and offer new glimpses of redemption in a post-market world.

Just to say how pleased we are here at Patient Opinion that we have signed contracts with Capita to roll out Patient Opinion as the national website for all mental health service users, carers and patients to feedback their experiences of treatment and care.  Postings coming to Patient Opinion will be reposted onto NHS Choices and vice versa.  We will be holding regional events round the country for all mental health trusts and other stakeholders, to join the on line dialogues about how we can all improve services.  The Department of Health is expecting that ““in meeting their Next Steps obligations to consult with the public Trusts can use a range of data including feedback from sites like Patient Opinion”.  There is a real acknowledgement that this type of service user and carer feedback is key to driving up quality.