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Why not have a web conversation with patients

Patient engagement runs the risk of data overload. But a website where patients can tell their stories is proving a useful qualitative tool for commissioners. James Munro explains

Patient engagement runs the risk of data overload. But a website where patients can tell their stories is proving a useful qualitative tool for commissioners. James Munro explains

The idea behind Patient Opinion came from Dr Paul Hodgkin, a GP in Sheffield, who looked at how reputations of people were created with feedback on eBay and wondered if it would be possible to do the same thing in the NHS.

The point of Patient Opinion, of which Dr Hodgkin is now chief executive, is to create moderated, structured online conversations about the quality of care. It's not a free-for-all.

The patient feedback is the starting point, then we want to have the provider's point of view, the commissioner's point of view and so on.

Subscribers who are NHS providers or commissioners can set up automatic email alerts so that whenever feedback comes in, they can create reports to show what the feedback within their subscription is showing, compare services and so on.

They can also respond online to comments and choose at what critical level they are sent the feedback.

We have policies to deal with anything like suggestions of negligence. A serious comment would be checked first, and we might choose to forward it to the chief executive and the Healthcare Commission, which subscribes to the service already.

What always surprises people is that half of what we get is positive – it's not just an opportunity for people to moan.

Key objectives

Our vision is to use the power of the web to involve more people. We aim to make it easier for patients to give feedback. People don't give feedback for many reasons: because they're scared, feel vulnerable or don't want to upset their relationship with the healthcare provider.

Often there are loads of things they'd love to say – not necessarily serious things, but we get lots of small things that would have made a difference, would have made care better, often things that are easy to fix and cost nothing.

The second aim is to get those opinions to the people who need to see them. Normally a patient would have to turn up to a meeting and battle through bureaucracy.

With Patient Opinion patients don't need to know how the NHS is organised – we can take their experience and get to the people who can make a difference.

However, our main aim is not feedback just for the sake of it, it's feedback for the sake of making services better. PBC practices have their obligations in terms of ensuring they know what their patients think of services: both in terms of what services are required and whether the ones that are currently commissioned are meeting needs.

This feeds into that. Currently most of our feedback is about hospital services but gradually we're adding on other services and I suspect that one day we, or somebody else, will start to do this for primary care.

PBC consortiums have an interest here both as commissioners and providers of primary care services: from the position of commissioners, using Patient Opinion

to monitor what their patients are saying about the care they're being referred to, and as providers to gather feedback about the care being provided by the practices in the consortium itself.

The little things

Because the threshold of participation is very low, we probably hear more subtle comments than you would hear otherwise. With PALs, or with a formal complaint, people only tend to bring significant issues.

But the little things can have a big impact on the quality of a patient's experience: for example, an elderly patient not being able to get the cling film off their sandwich in hospital has a knock-on effect when the elderly fail to get decent nutrition.

It ultimately has a clinical effect, but they're never going to make a complaint about it. Parking turns out to be an extraordinarily important issue when people miss appointments because of problems with it.

As we become better known, we hope comments will flood in though the web, but at the moment we are working locally in particular areas, such as Yorkshire, Humber and the North-West.

In some places the PBC consortiums are writing to their patients after discharge from hospital with a form we provide and we type it up and put it on the web for them.

It is a very clear and user-friendly site, but the challenge we face now is how to add more without making the site harder to use.

We're set up as a social enterprise. We are an independent company but one where the point isn't profit – the point is to help improve services and this is being recognised.

Patient Opinion is having an impact in the areas where we are working locally, and we also recently won a New Statesman New Media award.

James Munro is director of informatics and research at Patient Opinion

Patient Opinion – how it works

Patient Opinion is a website where patients can tell other people what happened to them during their NHS experience.

Other patients can use this information to decide whether they would also wish to use those services or not. They can also rate an NHS service out of five stars. Providers and commissioners can see what patients are saying about a service and take steps to improve. They can then post replies saying what they have done in light of what patients have said.

Patients' stories are posted without the patient publishing their name. The site asks patients for their postcode when they submit a story but this is not published and patients are assured their postcode will not be passed on. The only other information Patient Opinion has about the patient is their email address (which patients are also assured is never passed on) and this is the only way the patient can be contacted.

All stories are read by the Patient Opinion team before being posted on the site to ensure postings are not obscene, defamatory or offensive and reserve the right not to publish. If a posting is very critical of an NHS service the sender will be emailed and asked if it was sent in good faith and if that is confirmed the posting will be put on the site with the hospital or provider given an opportunity to respond.

All opinions – published or not – are forwarded to the Healthcare Commission.

Our main aim is not feedback for the sake of it, it's feedback for the sake of making services better.

Case study 1: ‘This is human, detailed feedback'

Dr StJohn Livesey is GP clinical leader of the South Sheffield Practice Based Commissioning Consortium, which has been using Patient Opinion for two years...
Our consortium started using Patient Opinion in 2006/7 as a means of getting the necessary feedback from our patients about the quality of the services they were using. We chose Patient Opinion as it's a straightforward way of getting feedback.

The way we have used it so far is that the practice has sent out feedback forms to patients who return them to Patient Opinion team, who put them online. If one of our patients makes a comment on the Patient Opinion site about a local service, we will automatically receive a link to it.

All types of feedback are valid, but what I like about Patient Opinion is it is more interesting, more human. You get more detail than you would with a rating system, for example, and because it is written in the patients' own words you get more of a feel for what they are saying.
Patient Opinion gives you the story behind the statistics and I find that fascinating.

Another advantage is that it helps overcome what has traditionally been a big problem for GPs trying to get good feedback – that is reaching large groups of patients. Using the internet gives you the ability to reach a different group.

It is also good to see new technology being used in an innovative way within the NHS, which traditionally has been poor at using new technology generally.

The future

At the moment we are using the service in a rather ad-hoc manner, and that is something that needs to be looked at. As the consortium gets more established, our use of feedback and the manner in which we obtain it will hopefully mature.

In our first year, the consortium was in turn-around, and our efforts were concentrated on survival. We lost quite a bit of ground trying to define what we were doing, and feedback is something that is easy to leave on the back burner.

This year we have savings and have put in place several pathways – one of which is obtaining good feedback from our patients. To do this, we need to start using Patient Opinion a bit more formally. We will probably also need other feedback such as focus groups.

Using the information

We don't intend to use the information we get from Patient Opinion as a stick to beat commissioning partners with, but rather we hope it will give us a means for informed discussion.

If, for example, we got constantly poor feedback about a service, we would use that as a basis to try to influence the service and improve it to get the best for our patients. We are not in the business of trying to undermine local services – we wouldn't at this stage use the data to say we'd take the contract elsewhere.

In the future, it would be great to use Patient Opinion to get feedback about the performance of practices in consortiums – but not everyone would be comfortable with this. But used positively feedback can be a great force for the good.

Having a web conversation with patients Case study 2: ‘we can offer information to improve patient choice'

Helen Griffiths, support and implementation manager for Principia, shares her organisation's experience of Patient Opinion so far...
Principia is a social enterprise that controls the indicative budgets for PBC for 16 practices in the former Rushcliffe PCT. For us, patient involvement and accountability is not just a box to tick. Our vision is to deliver services in primary care that our patients want, and this is where Patient Opinion fits in with our aims. We first came across it at an innovations conference and we recognised a positive vehicle that reflected our own values.

Patient Opinion allows patients who have been through some form of secondary care experience to offer feedback that the providers and commissioners can use to evaluate the service.

The comments are published on the site and thus also provide a resource to patients who want to find out about the experience of others who have been through, say, an independent treatment centre or a private hospital as opposed to the main hospital. There is also the facility for the provider to reply to the comments and we receive email alerts when a relevant comment is posted.

It appealed to us because it exists outside Principia and the PCT. It isn't part of the complaints system, and it isn't just a case of the patient reporting back to the providers and commissioners who have offered the service in the first place.

We took out the contract with Patient Opinion last November, initially for 12 months. So far we have found it very useful and interesting and we've had a good feedback rate.

The arrangement we have with Patient Opinion means patients have a choice of methods to give their feedback. We can actively manage at practice level how we gather the feedback: we can send out prepaid questionnaires, or hand out a freephone number as well as offering the chance to comment via the website. This lets us access a much broader patient base than we could get using just one method. Someone aged 75, for instance, might be happier picking up the phone for a free chat rather than having to access the web.

The commissioning niche

One of the ways we'd like to develop the relationship with Patient Opinion further – which they are entirely on board with – is that as we develop more services locally that historically have been provided within hospital settings, Patient Opinion can put them on its website so patients can give feedback. For example, we have established a surgical dermatology service in one of our health centres and this will shortly be added to the site, allowing patients to post opinions.

We've been looking into different pathways we could develop with Patient Opinion and we want to have more specific feedback on our own services as well as services that have been commissioned.

I foresee this happening more with the shift of services into the community. It could also have an impact on how we commission. It's really useful to know when things haven't gone well, and why they haven't, and using the information we get from Patient Opinion we can give feedback to our own PCT and commissioners.

It hasn't arisen so far, but theoretically we could take the information from Patient Opinion back to our governance directorate and they would then work with our commissioning directorate when SLAs came up for review. For example, if there was consistent feedback about poor cleanliness, safety on wards, or poor communication about discharge arrangements, we have a responsibility to look at that feedback and use it in contract renegotiations.

We've had a positive response rate to questionnaires that have been sent out to patients. They like the fact that they have a channel in which they can bring up more ‘trivial' issues that they might feel bad about raising with the hospital that has just improved their health.

It has uncovered issues like parking and catering which clinically we don't see as a priority but which come up all the time, and are obviously very important to the patient.

Patient choice

We talk a lot about patient choice, but people say they don't know what the choices are. They know, for instance, there is the big teaching hospital locally but they've no idea what their infection control is like, or what their catering facilities are like, or whatever it is that's important to them as patients. Patient Opinion can help us make that sort of information available to our patient population.

It reflects the modern approach that we've all got used to: if you are looking for a holiday or hotel, you go onto the internet and on something like Trip Advisor you can find feedback on the quality of the experiences people have had.

The facility for the provider to respond to comments is a great advantage. That patients can feel actively managed by the provider and get some sort of resolution is all to the good. Our patient reference group are very positive about the fact that we have this available.

I'm sure with the emphasis on greater choice Patient Opinion will ultimately roll out into primary care services. It's still embryonic in terms of the potential of what it could offer.

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