I began as an intern at Patient Opinion three weeks ago and have learnt a lot working alongside Kate Ebbutt, learning how the organisation works and how our old friends, Facebook, Twitter and Blogging can help to redesign the way patients interact and gain feedback from their health services. Since starting, I have found myself straying from the entertainment section, to now searching the society and health section of the Guardian website, hoping to find out more about how a health service I always took for granted actually works.

Patient Opinion has told me that patient interaction and feedback is essential to improve services. But I’m interested in why this works. Right now, the NHS is owned by all of us – we feel pride in it (as the #welovethenhs campaign last year showed) and we want it to be great. I can’t imagine wanting to share my story, hoping to make shopping at Tesco better – but somehow it works for the NHS. We feel ownership, and that ownership makes us want to help the NHS. If the health service becomes more commercial – would we still feel that way?

The NHS Reforms have quickly become a real interest for me.The Health and Social Care Bill has fast become one of the most contentious pieces of legislation in British history. Their main proposals seem sensible; to create an independent central NHS Board which keeps an eye on spending across the country, to promote patient choice, and to reduce NHS administration costs. According to proposals, funding and commissioning local health services for patients will no longer be handled by Primary Care Trusts; instead they will be overseen by groups of GPs. However, as this is a new skill for them, GPs will need help – and this help often comes in the form of private consultancy and management companies. The concern is that this will encourage more privatisation and commercial competition.

Criticism of these changes stems from the fear that new reforms would enhance private investment, at the cost of patient welfare. Competition has become the most controversial NHS proposal by the coalition. It is fantastic for business, where it drives quality, but can the NHS be regarded as a business in which competition will flourish? As Doctor Sohom Das remarks, ‘One only has to look at the outcome of the privatization of rail services - dire quality and ever inflating fares’.

I personally feel that it is us, you and me, who make our health services great. Our engagement with the services, sharing our experiences and working collectively to make a difference is key. The question is: would we still feel like this about an NHS that expects us to act as customers, not citizens?

Two weeks ago we held a very lively North of England stakeholder event in Sheffield. And, in the course of what was a very stimulating and enjoyable day, there was one brief exchange between a speaker and a participant which really made me think.

Jane Danforth, involvement manager at Nottinghamshire Healthcare NHS Trust, was speaking about the impact of Patient Opinion in the trust. And Helen Forrester, the manager of B50, one of the trust's adult mental health inpatient wards, talked about how using Patient Opinion had changed the culture of her ward. (Their slides are available.)

One of the participants asked how many stories the trust received through Patient Opinion. Jane pointed to the figure on the slide - "259".

"Oh, so 259 per month?"

"No", said Jane. "259 since we started."

The questioner - and one or two others - looked rather taken aback.

And that was the moment the proverbial light bulb above my head went on. That was exactly the point: it wasn't that Helen had seen significant changes in her ward culture despite there being only 259 stories across the trust. It was that just 259 stories (and many fewer specifically about ward B50) on a public web site had been enough to help her change the culture in important ways. That was all it took.

Of course, everyone (including me) is used to thinking that we need thousands of responses to surveys to tell us anything reliable. But here were worthwhile changes in culture and practice in the wake of a much smaller number of stories.

The point was underlined later in the day, when Steve Eastwood, a commissioner of drug and alcohol services in the North West, talked about how the stories they had received through Patient Opinion were helping them commission better services. (Slides available.)

How many stories? 78.

So there's the question: how many stories is enough? And, of course, we know the answer: enough for what?

It all depends on what you want to achieve. What are your objectives? Why do you want to hear the experiences of patients and carers?

If your objective is to measure (as it so often is in the NHS, where "listening" and "measuring" seem to be used almost interchangeably), and compare those measures between times or places, then yes, you will need a lot of responses to gain the precision and certainty you need.

But if your objective is to change culture, empower patients, prompt staff reflection, or improve services, then on the evidence of Jane, Helen and Steve it seems that a very much smaller number of stories - coupled with an understanding of how to use them - may be more than enough.

At last, I'm starting to understand why we talk about the power of stories.

Hi, my name is Jane Danforth. I work as an Involvement Officer for Nottinghamshire Healthcare NHS Trust. It’s a huge integrated mental health, learning disability and community health services organisation covering Local and Forensic services, Community Health services and Offender Healthcare. It’s my first time writing a blog on the Patient Opinion site. I hope you will find it interesting.

I’m really lucky to work in an organisation that supports an Involvement team with two Involvement Centres. It’s true to say I am blessed with great support from the top of our organisation; Professor Mike Cooke CBE (our CEO) my manager and also from Trust colleagues and Patient Opinion (PO)

How can I describe the PO team and what they offer to us? Well, for one, ‘real time’ feedback is starting to change the way we do things in the Trust. 2011 has been the best year for us yet. We were named as Pioneers of the Month for PO last year and we held the record for the fastest posting and response times of any Trust! We get Facebook and Twitter posts about us leading the way for patient feedback and it’s made my job so enjoyable. It has done our Trust the world of good and given us a platform to prove that our ‘Positive’ brand is not rhetoric and spin. PO has made a difference and offered value for money to the organisation. People say how much they like it and find it a great way to share how they feel about our services and what they would like to see get better.

Open and honest feedback sometimes means you have to take a deep breath and think hard about how you are going to respond to stories that are not always complimentary. The support of a great Communications Team makes all the difference. Julie Grant, Head of Communications is my sounding board and someone I can go to when challenges arise. Equally Sam Eagling, managing PALS and Complaints (Service Liaison) helps complete the circle of communication. I know that between us we can help to make things happen and people posting on the site get their voices heard. Things actually can change for the better and we have seen it happen ‘before our very eyes’!

I’m really pleased to say that the majority of our feedback is complimentary. I know staff get a real lift from postings that praise what they do and when we can’t always do what people ask, we can at least explain why some things are the way they are. I really believe it can stop people taking things further when issues arise and over next year we are going to try and evaluate this.

Our involvement volunteers take on many different roles. This year and in 2012 we will continue carrying the Olympic torch for PO.

Our PO Champions are making a difference using a ‘pass it on’ philosophy. Champions are made up of service users, carers, families and staff including Governors. For everyone they tell about PO they encourage others to tell someone else. Word of mouth is a powerful marketing tool, if you are good you can get always get better and positive feedback is a massive motivator. Equally when feedback is not good you have to listen and work together to resolve issues.

Next month I am going to tell you more about our iPad pilot. We launched a trial across the Trust in Local and Forensic services and believe me it’s been an exciting time! To be honest, It has increased my workload initially but it’s also given me such a buzz when I can see staff becoming responders and our youngest ever posting was from a 10 year old using our child and adolescent mental health services and in case you are wondering? Yes it was positive!

In January, we will be looking forward to the year ahead. My manager Paul Sanguinazzi, Head of Involvement, is keen that we really focus on getting a seamless reporting system that pulls together all our feedback in the Trust.

Other Trusts have started to ask me how we work with online feedback and I look forward to February 9th where we have been invited to speak at the regional PO event in Sheffield about how we have made it work for us in Nottinghamshire Healthcare.

And finally, I would like to share with you a letter of thanks that was given to me at the beginning of the week from a patient who was being discharged. This posting made my year: A letter of thanks for the staff on Ward B2

Back in 2005 when social media was just getting going I read the Cluetrain Manifesto. It told companies in no uncertain terms about just how different the coming world of informed consumers was going to be. Cluetrain was big, famous and influential. It used this picture to illustrate the way that companies were treating their customers.

Not very Christmassy I grant you but arresting. And if you were being unkind – or had just spent too much time at the Mid Staffs inquiry – you might think that incidental roadkill is exactly how lots of people who have been harmed by the NHS end up feeling.

So our (slightly sombre) Christmas Cracker is a new version of the manifesto re-written for the NHS and updated to take account of social media. (And our thanks, acknowledgements and apologies to the great original.)

A Cluetrain Manifesto for the NHS

People using social media communicate in language that is natural, open, honest, direct, funny and often shocking. Whether explaining or complaining, joking or serious, the human voice is unmistakably genuine. It can't be faked.

On the other hand when the NHS ventures on-line it usually talks in the humourless monotone of a Comms strategy, and the your-call-is-important-to-us busy signal. Same old tone, same old evasions. No wonder people are beginning to lose respect for a health service unable or unwilling to speak as they do.

But learning to speak in a human voice is not some trick. Trusts and Health Boards will not convince us they are human with lip service about "listening to customers." They will only sound human when they empower real human beings to speak on their behalf. This isn’t difficult – some health organisations are already doing it really well.

Twelve Propositions for the NHS in 2012

1. Social media means that the networks surrounding health services are getting smarter, more informed, more organized. Participation in these networks changes people fundamentally.
2. There are no secrets in this new world. Combine open data with democratised voice and whether the news is good or bad, everyone will know it.
3. With a billion people on Face Book the NHS’s attempts at patient engagement and empowerment look increasingly out of touch with reality.
4. The hard-to-reach aren’t 'out there' – they are alive and well and working in the NHS.
5. The NHS is having two conversations. One with itself. The other with everyone else. In most cases, neither conversation is going very well. Almost invariably, the cause of failure can be traced to obsolete notions of command and control.
6. Front-line staff - who make the wheels of the NHS turn each day - want to join these public conversations directly in their own voices, not in platitudes written by the Director of Comms.

Meanwhile what people are thinking online goes something like this:

7. The people we’d really like to talk to on-line are the nurses and doctors who look after us. But you always hide them behind a corporate smokescreen that prevents anyone taking responsibility for the words that come out of their mouths. Don’t you trust them? Or is it us you don’t trust?

8. We already know some people who work for you. They're pretty cool online. Do you have any more like that you're hiding? Can they come out and play? When we have questions we turn to each other for answers. If you didn't have such a tight rein on "your people" maybe they'd be among the people we'd turn to.

9. We’d be delighted if the NHS joined us in this new world of social media. But it's our world. Take your shoes off at the door, start talking human! Even at their worst, our on-line conversations about your services are more interesting than all that corporate flim-flam you’ve been shoving at us since Mrs Thatcher's time.

10. We've got some ideas for you too: some new tools, stuff that will make your services better, and your staff happier. For free, right now. Got a minute?  

11. We'd like it if you got what's going on here. That would be really nice. But it would be a big mistake to think we're holding our breath. We have better things to do than worry about whether you'll change in time to get all this. Health care is important but it’s only a small part of our lives. It seems to be all of yours. Think about it: who needs whom? 

12. To the NHS these networked conversations may appear confused, may sound confusing. But we are organizing faster than you. We have better tools, more new ideas, no rules to slow us down. We are waking up and linking to each other. We are watching.

But we are not waiting.                                                                                                         

                                                                                      Happy Christmas!