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The power of patient information

IMS Maxims : 25 March, 2011  (Special Report)
Shane Tickell, Chief Executive Officer of IMS MAXIMS, argues that a bolder and more imaginative approach to patient information could radically improve patient satisfaction levels and cut complaints in the NHS.
At the same time Tickell calls for a radical change in the VAT system to allow the UK’s healthcare IT companies to develop the solutions which the NHS really needs.

A quick question for NHS managers who would like to see complaints plummet and satisfaction levels increase without any change in care services? I strongly suspect this is possible and part of the reason I raise it is that it feeds into all the issues surrounding electronic patient information.

My company deals with the NHS a great deal, and I know the frustration that many staff has over perceptions about quality of service. One of the main reasons for this is that patients, and their families, still so often feel out of the loop and uninformed about the events which are affecting them. And in some situations these can be the most important things that will ever happen in their lives.

For example, I know someone who has worked in communications with a large NHS healthcare provider, who regularly had to deal with newspaper stories alleging poor treatment of patients where there was none. Typical scenarios included horrified relatives discovering their much-loved elderly mum, who had just had a hip replacement, was made to walk to the toilet rather than given a bed pan. The relatives then say they can’t get any proper explanation, tempers flare, complaints follow. It would make such a difference if loved ones could have called up mum’s treatment details electronically and seen that this was an essential part of her rehabilitation hugely increasing her chances of a quick and full return to independent life by getting her moving asap.

Keeping track of loved ones
It is irritating for the health service to hear comparisons with the retail sector, but surely it is bizarre that you can sit at your computer and track the progress of a parcel being delivered to you from another part of the world, but you can’t get easy details of how a hospitalised relative is doing. There are already some great examples of what can be done, like the award-winning Babyview website run by the Simpsons neonatal unit at the Royal Infirmary of Edinburgh. It’s great because there are general areas where anyone can go and find information about the unit and its work, and secure sections where parents can keep up to date with the care of their son or daughter. Universalise this approach and you can go a long way to stopping complaints from starting, because people feel informed and involved.

What worries me is that the debate about patient information so often gets bogged down in sterile debates about data control. We would be far better off looking at things in terms of where we would like to be in 10, even 20 years time, then working out how best to get there. I strongly suspect that with social networking transforming what people tell the world about themselves, there are vast and rapidly growing numbers of people who want their full health records to be held and accessed electronically. Indeed, they will not only want appropriate healthcare professionals to see them, but will want to be able to read them for themselves, and share them with selected others.

I would also imagine that people would increasingly want to have the information flow two ways. That doesn’t just mean angry patients being able to challenge an element of their record, but something far more creative and benign. For example, make it standard for many patients to have a care page where people could read about them and leave messages, or read updates from the patient or a trusted relative. These are clearly the sorts of things people will already be doing informally, using Facebook and Twitter. And when families are under extreme pressure, perhaps keeping vigil for a dying relative, the prospect of being able to put an electronic message up rather than make phone calls, could be a major relief for some. Even better if a member of staff can do it for them.

IT to question staff
There’s even the option to use such a system to ask questions to staff after all it can be very difficult to get hold of the right person and meet them face-to-face. Other advantages flow from this approach, one of them is the reliability of the information that patients, carers and others use when they are discussing issues at home. When people under pressure meet a doctor, especially in the unfamiliar environment of a hospital, there’s no guarantee that they will fully take in, or remember what is said. Even a basic electronic note, created as part of the normal record-keeping procedure, would give them something to refer to and cut the risk of them getting things wrong and often getting overly fearful.

Obviously this plunges us into issues about patient confidentiality and data security. No one should underestimate the hurt and harm it could causes when people discover that intensely private aspects of their lives are known by others a long-ago attempt to take their own life, years of hard work to escape drug addiction there’s no shortage of sources of stigma. But these are areas which IT systems are ever-more capable of addressing and we should perhaps be more open to the idea that patients should have choices over what information is shared, with whom and how.

The reality of patient choice
When politicians talk about choice in healthcare it can sometimes be pretty illusory. For example, in emergency care I doubt many people with a heart attack are going to demand the paramedic gives them a choice of hospitals to be rushed to. They want treatment, they want it fast. Yet I am a firm believer in choice, and when it comes to information there are huge opportunities for people to be engaged. Indeed, information and the creation of the fullest possible care records are one of the prime ways in which we can deliver the founding NHS vision of a pathway of care that goes from cradle to grave. And as the information is about the patient, it seems eminently reasonable and democratic that they can make decisions about its use.

In many cases patients will simply want information to be available as and when it’s needed; some people will go to the other extreme and want major opt outs on the electronic exchange of personal data. Even then, I suspect that the decision would depend on the circumstances. Once in hospital it takes a quick discussion and signature to give consent to the most invasive possible surgical procedures. Under those circumstances, a few seconds more to ask if the clinicians might have electronic access to someone’s health details to ensure they are doing the right thing, will mostly get a yes.

Looking to the future
Right now we are at a major junction in the history of the NHS: huge changes are on the way and the government says it believes that IT has a big role to play. We should make the most of that idea and push for things to happen. A much broader approach to the use of patient information may seem bold now, but in a few years most people would wonder what the fuss had been about.

Yet there is a huge issue of resources. Creating and implementing the solutions we need would take time and money, however the UK has a hugely innovative healthcare IT sector which can do the job creatively and cost-effectively. As to paying for it stop collecting and processing VAT in the public sector and huge resources can be freed up straight away. After all, the government has just announced that the tax take for the UK has been considerably higher than expected, so this would be a great way to spread the benefits to the public and industry.
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