Today we officially launch our mental health platform. Of course, people have been sharing stories about mental health services for a long time following our pilot in the 5 Boroughs Partnership back in 2007.

We're hoping lots of people hear about what we're doing and share their story. Jason, who's just joined the Patient Opinion team, is an ex service user and volunteer at primary care addiction services in Sheffield and has an inspiring story to tell about how the independence and honesty of Patient Opinion was crucial in bringing about change in addiction services. Even we're impressed listening to him! We captured him on video and the Society Guardian went one better and put his face on page 3 yesterday. E-health insider ran a story this morning and we know many regional and local papers and radio stations are picking up on the launch today. Phil Hope, Care Services Minister offered his support saying "This partnership means every single Trust in the country can see what they are doing well and what needs to be improved, helping to drive up quality."

Through the course of this year, we've been travelling the length and breadth of England talking to staff and users about what this will mean, how we're doing everything we can to keep the system safe (on both sides) and how the system will lead to real service improvement. It was important to us that we equipped staff with the understanding and skill to communicate directly and honestly with service users, their families and carers through the website . Much more importantly, we wanted to be sure that they knew how to take the comments, suggestions and concerns they would hear and do something meaningful with them. After all, that's what we're all about - making people's experiences count. According to Maria, Head of Service at the 5 Boroughs Partnership during our pilot, the stories she received through Patient Opinion 'made issues real' and gave her the opportunity to 'facilitate some real reflection among staff'. And we have lots of examples, across mental health and acute care, where trusts have demonstrated through their responses on the site that they're truly listening and taking value from peoples stories.

From past experience we know just how honest, passionate and thoughtful people can be on Patient Opinion. We also know that sharing their stories on the site can lead to real improvements in services. What we don't know is what you think of your local mental health services so please share your story and make a difference.

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.

A rather depressing posting arrived on the Patient Opinion site today.

A sentence near the end sums it up rather well: "How do I complain about the waste-of-time complaints procedure?"

The posting reminded me that the Patients Association had recently published their report NHS Complaints: who cares? who can make it better? So I went off to read it and see how typical this contributor's experience might be.

The Patients Association surveyed 1500 patients for its report, of whom fewer than 500 responded, so there is plenty of room for bias. But one finding caught my eye: of those with experience of using the NHS complaints system, 20% had found the process "pointless" and almost a further 30% had found it "totally pointless". By contrast, about 13% had found it "useful" and a further 2% "very useful".

There is quite a strong message here. Whatever it is that patients are trying to achieve through the complaints system, it evidently fails to deliver for a large proportion. But what are patients trying to achieve?

The report's findings suggest that a large proportion of patients want the system to:

• make sure everyone learns from a mistake
• ensure it doesn't happen to other people
• ensure patient's views are heard in the future
• change clinical behaviour

Interestingly, this fits exactly with our own experience at Patient Opinion. Sometimes a hospital will contact us about a critical posting on our site. "Can you remove it?" they say, "and ask the patient to make a complaint instead?" We don't remove it (of course), but we will email the patient in confidence to ask if they would like to make a complaint. And in every case to date, the patient has replied: "No, I don't want to make a complaint. I'm not trying to get anyone into trouble. I just want the problem fixed so it doesn't happen to anyone else."

Reflecting on this, a series of vague but insistent thoughts are beginning to form:

• Is the number of complaints in the NHS driven by the lack of alternative ways to feed in one's experience?
• Do hospitals drive people towards the complaints process because it is the only institutional system available?
• If other systems were available (you can see where I'm going here) which offered the possibility of being heard, helping people to learn, and making a difference to the service, would patients prefer that to the existing complaints system?
• And what would need to happen (in any system) for the majority of people to say that the process had been "useful" rather than "pointless"?

I might as well be blunt: could Patient Opinion help hospitals move towards a triple benefit: fewer complaints, greater learning from experience, and happier patients? I think we should find out!

Does it matter who runs web-based public feedback sites? There’s been some pretty heated discussion in the past with lots of people saying that citizens will only trust sites if they are independent of government (and we’ve certainly added our share of heat to support this argument!).  Meanwhile the government and people in the health service often think that Joe Public just doesn’t care and the NHS is a trusted brand that people will be happy to give feedback to. 

Up to now this argument has been almost exclusively assertion-based on both sides because web-based feedback at scale is all so new that there has been little hard evidence either way. But now that NHS Choices has been collecting feedback for more than a year we’re beginning to get some results from this natural experiment in citizen democracy and feedback.

The data so far is interesting. In terms of the numbers of postings both sites generate about equal volumes of stories across England.  Thanks to a Freedom of Information request made by someone on MySociety’s fabulous FOI site we now know that:

·        NHS Choices reject around 24% of all stories submitted compared with a 5% rejection rate for Patient Opinion.

·        Comparable hospitals respond more frequently to stories on Patient Opinion than on Choices. Comparing like with like across both sites  42% of all postings on NHS Choices generate a response from the hospital compared with about 65% on Patient Opinion.

·        Length of story and response are about equal on both sites although stories in general are a bit more positive on Patient Opinion. 

For Patient Opinion we also know that stories are reasonably balanced across all classes: the number of stories from the less affluent 50% of postcodes more or less equals the number from the most affluent. Comparable data is not available for NHS Choices.   So no firm conclusions yet but some interesting straws in the wind.

And of course we’re hardly unbiased in all this. What is needed is a quick study of both sites using full access to internal data by someone nice and independent. So we’ve suggested to the Central Office of Information in Whitehall that this might be a really interesting thing to do before we spend lots more on huge government sites like NHS Choices or – conversely – perhaps waste (rather less) money on independent organisations like us. And happily they seem quite interested. We’ll keep you posted…. 

There's a lot of talk around about using technology to improve healthcare - making more information available, giving patients a voice, helping them manage their care by making patient records accessible online, and it's thowing up some real key issues.  Empowering patients to have more knowledge about their conditions, more information about the services they receive, to have more choice, appears to a step in the right direction, but what about the implications?  A lot of the issues are around power and who is in control - the public has access to more information than ever before, and this all works against the paternalistic model of care.

We are starting to see a real power struggle, between those who have traditionally controlled healthcare (clinicians, GPs) and those receiving it.  For a number of years there's been a recognition that expert patients, those with a good understanding of their condition, visit their GP less often - in 2005 the Department of Health launched the Expert Patient Initiative.  At the time only 21% of doctors were in favour of this approach to supporting those with long term conditions like diabetes, arthritis and Parkinson's, there's still a considerable number out there who think patients "do not have wisdom but follow prejudice, hearsay, and urban mythology" (Ray Jones).

Patients are being encouraged by the government to take control of their care, the internet has supported a new phenomenon, patient opinion leaders, and expert patients are becoming more and more common, as this post in HSJ indicates "People with chronic conditions are sharing their stories with each other, not just for emotional support, but for the clinical knowledge they gain in an online community." (Jane Sarasohn-Kahn of the think tank THINK-Health and author of a report on health 2.0).

This power struggle is becoming a major issue in the US.  According to Dr. Robert Lamberts, an internal medicine physician and medical blogger in America “Doctors used to be the only source for information on medical problems and what to do, but now our knowledge is demystified.”  “When patients come in with preconceived ideas about what we should do, they do get perturbed at us for not listening. I do my best to explain why I do what I do, but some people are not satisfied until we do what they want.”

Sharing information is driving the shift in power.  Patients have a voice and have access to others stories about their care, but is anyone really listening to them?  Here's the real issue - technology is just an enabler, it supports change and improvement and innovation, but it can't make it happen.  Without the ability for people to make it happen, it won't.  Throwing money at technology is not the answer.  Technology can only go so far, it needs a real, adult conversation between patient and doctor and the ability of staff to make changes without being stuck in a bureaucratic loop.  Patients are changing and starting to take control, those working in the NHS need, in my humble opinion, to release some.