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

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.

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?

"In times of change the learners will inherit the earth while the knowers will find themselves beautifully equipped to deal with a world that no longer exists."- Eric Hoffer

One of the goals of the NHS Future Forum was to put accountability and patient involvement at the forefront of how hospitals and trusts operate.

The web has already transformed the business world, changing our relationship with sectors such as music, journalism, advertising and retailing and it’s just begun to have a similarly transformative effect on healthcare.

Fifteen years ago the only way to publicly raise concerns about local health services was to get a letter or story published in a newspaper.

The web has changed all that. Everyone from the high street retailer to the local hospital can be held accountable in a public, on the Internet. Through social media anyone can blog, tweet, or post a photo of a dirty ward on Flickr.

All this shifts power away from institutions and towards citizens – but having a voice is not the same as being heard. Without engaging busy staff, the angry just shout louder while the quiet folk leave.

This puts the onus squarely on health services to proactively interact with patients in an authentic and engaging way, and with the wealth of tools available thanks to the internet and rise of social media, there is no way they can shun this responsibility, while maintaining public credibility. 

We all know that the experience of being a patient is central to understanding the effectiveness of services, and how they can be improved. And the web is becoming a vital tool for listening to patients.

On Patient Opinion we ask patients and carers to share their stories of recent health care experiences with other people. We publish them for anyone to read and learn from. We tag the stories, and link them to the relevant part of the NHS system so that health care providers and commissioners can easily find feedback about their own local services.

The health service can register for free with Patient Opinion, to be alerted to relevant stories and if they want respond public, and even showing when a service improvement has been made as a result of a story.

When a patient shares their story online, there are no pre-set questions, so they can talk about what is important to them. This freedom is not allowed in the standard patient satisfaction survey, and allows patients to raise issues of which staff may be entirely unaware.

As a case in point, the following posting was contributed by a man on an orthopaedic ward in Northampton Hospital:

“I liked the love, care and attention of every member of staff, it was terrific.

“What needs improvement are the toilet seats. Those on the wheelchairs and those fitted to the home toilet, they are useless. They are only made for women, men cannot sit and urinate and open their bowels as men’s genitals will not sit inside the opening. This means one has to [sit down to use the toilet], then stand and turn to urinate. With a knee/hip replacement operation it becomes like mission impossible. I spoke to eight other men who agreed.”

Five top tips, to help health services make the most of online feedback

This article was first published by the Health Service Journal on 15th Spetember 2011

So the CQC find that in one in five hospitals the care of the elderly is poor. No surprise there given the stories we are often told on Patient Opinion. So will the Health and Social care Bill that squeaked through the Lords yesterday make any difference?

If we set aside all the organisational turmoil of making the changes (a big set aside I grant you) will the reforms once fully in place make any difference?

Our guess here at Patient Opinion is sadly, probably not. We don’t doubt the sincerity of the Secretary of State in wanting to put the patient squarely at the centre of things but the NHS still wants to do this on its own terms. Look at its behaviour – even in the way it seeks to put patients centre stage – it’s still deeply focused on its own needs: You answer the questions that we put in our questionnaires. We look at the results and if you’re lucky you might see the occasional change.

Nothing wrong with this except it is the NHS itself and its own needs that are taking centre stage, not the patients’. Out there people want be part of a conversation as they are on FaceBook and Twitter and they really don’t see themselves as feedback fodder any more.

So what would make a difference to how we care for elderly people? Saying ‘Lessons will be learnt’ is no longer adequate. Indeed after so many inquires and debacles the next politician who says this kind of thing (no matter if it is true) is likely to be lynched by the media.

What we need to do is to make the desire to listen a reality, and for the first time ever we can move beyond platitudes and start to do this in ways that give the patient’s side of the conversation real power. The next time there is something like the CQC report telling us of yet another dreary failure, the response from Andrew Lansley should now be: ‘You’re right. We messed up. We know we need to listen. And we understand that you may not trust us to right now. So we want you to tell us what you think of the NHS, good and bad, in public, confidentially via independent sites like Patient Opinion. And we guarantee to reply, in public to every single story.’

Now that really would signal a sea-change in the scale, transparency and power of the patient voice.