Sharing records with realism

08 Apr 2008

Dr Neil Paul

I’ve been involved in some meetings with our local acute trust about a shared, computerised diabetes health record. Things seem to be going well, so I thought I’d share some of my thoughts about why that is the case.

There has been local talk of a shared, computerised diabetes record for about eight years, but it has never seemed as likely to happen as it does now.

The idea was previously hindered by a lack of understanding about what would be gained from having a record. Indeed, there was some feeling that secondary care just wanted primary care’s data for its own purposes, so all the information would go one way.

We have two new consultants who are IT literate and are championing the cause. They want to record their own consultations electronically and share information in the most efficient manner.

They have made it clear that they see this as a two-way process. They are keen for their information to come to our records and would like access to the relevant bits of ours. The fact they can see the benefits and are willing to be open and to share is driving the process, which has built up real momentum.

There have been several demonstrations from different companies, and at each demo we have had to have not just the consultants, but diabetic specialist nurses, podiatrists, dieticians, opticians, GPs (me) and all the appropriate IT people.

Although this is very time consuming and difficult to coordinate, it is right and proper to have all these people present - after all, they are going to have to use the new system and they all have a view.

It is amazing how many times someone at the back of the room comes up with a question that has great relevance. So although it is expensive I am convinced that it will, in time, make implementation easier.

No one wants pain without gain. We want each user to only have to input information once into a system that is designed for them and that is specific to their professional way of working.

We also want a system that only presents information relevant to the user. Nothing is worse than being forced to double enter information or keep paper records as well as electronic versions because the computer won’t record things your way. Except, perhaps, having a record cluttered with other people’s entries, which are meaningless to you.

It is very easy to get sucked into sales talks and future developments and to lose sight of the vision and what you are trying to deliver initially. By continually coming back to the vision, we stay on track.

However, it is amazing how long the process can take. Just seeing all the suppliers has taken months. How some of the national projects have such short timescales amazes me.

I went to an EMIS conference recently where the company stated that it has realised it cannot be everything to everyone. Instead, it took a decision a while ago to interoperate as much as possible.

This is very relevant to our local discussions about a diabetes record, as we have had meetings at which it looks as if one party’s solution could almost do for everyone – but with compromises.

It has become clear that we are never going to get so many different parties to agree to use the same system, and that going down this route would give too much power to one group that is refusing to cooperate. If everyone can use their own best system, that will be fine - as long as they talk to each other.

Are there any bigger messages from our local discussions? It might be worth reflecting on whether all the national IT projects are just as clinically driven, well led by opinion formers, keen to take all views into account and similarly realistic about what is possible and how long it will take.

Another point to emphasise is that reorganising the NHS while you are trying to get a project up and running just makes it harder. Locally, our PCT boundaries have been redrawn three times in as many years.

This just makes all the staff unsettled, anxious for their jobs and unwilling to commit to anything, as they don’t know if they will be around in six months’ time; which makes it hard to deliver on a long-term project.

Dr Paul is a GP in Sandbach, Cheshire and a member of the professional executive committee for Central and East Cheshire PCT and has a lead role for IM&T and practice based commissioning. A version of this article first appeared on the Microsoft NHS Resource Centre.

Reader's Comments

Disease centred systems?

09 Apr 08 12:31

Neil

Your points about the rewards and costs of genuine clinical consultation are well made. Also you cite the difficulties caused to clinical IT projects by continuous NHS reorganisations - which IMHO cannot be emphasised enough.

However I am unsure what the aim of your shared diabetic record initiative is. I assume this is outside the aegis of NPfIT. Nonetheless elsewhere and everywhere, lip service must be paid to the 'patient centred electronic healthcare record'. How this can be squared with disease centred systems - especially a disease as prevalent as diabetes?

There are reportedly over 2 million people with diabetes mellitus in the UK. http://news.bbc.co.uk/1/hi/health/4204830.stm

Diabetic patients are heavy consumers of many healthcare services - most are not specific to diabetics. The presence of diabetes mellitus in a patient should be a factor considered in virtually any medical decision. The disease is in turn influenced by most decisions.

One has to start somewhere. There are important wins to be gained while "Waiting for ****o" to benefit generations of diabetics yet unborn. Also 'Diabetes' is a significant constituency of professional interest - albeit the borders of this constituency are impossible to define.

However if "vanilla" healthcare IT systems are inadequate to manage the diabetic patient then don’t these systems need improvement, rather than tendering for bespoke applications?

Going out on a limb, I would argue that even something as seemingly specialised as diabetic retinal screening is just another instance of picture archiving and reporting, coupled with a generic screening call/recall service.

With hundreds of common diseases and thousands of rare ones, how can one 'system' per disease be scaleable - or even one system per National Service Framework?

Finally your phrase

>>If everyone can use their own best system, that will be fine - as long as they talk to each other.<<

is a microcosm of the latter-day 'best of breed' policies of the LSPs. Integration as jam tomorrow – and if Visio diagrams were the end point we would be drowning in jam. Caveat emptor - you may be faced with some very dry and increasingly stale bread.

Dr Malcolm H Duncan

Who remembers EURODIABETA?

chris@cjsquire.plus.com

07 May 08 13:35

This reminds me of my first attempt [unsuccessful] to enter the whacky world of health IT: applying for a job on the EURODIABETA project [http://tinyurl.com/6cwr8r]; the year? 1990. 18 years down the line, the diabetics are still waiting . .

SCI DC - DiabetiC Information System

slalgudi-seshasayee@nhs.net

14 May 08 15:06

The Scottish Care Information - Diabetes Collaboration (SCI-DC) has been a working reality since 1999. It is a centralized repository for all Diabetic specific patient records gathered from various primary and secondary care, SCI Store, Bio-Labs and the national retinal screening for Diabetics. A person with the appropriate access right can view these information through SCI DC network website. It has been a widely popular system amongst our clinicians. It aids our health care professional in providing excellent diabetic care to their Diabetic patients. Hence, I would like to disagree with people who believe that an expensive health care system is not worth creating. IT system for Long term disease management if designed and developed properly can go a long way in helping our health care professionals to provide the best care in time effective manner and it also helps financially on a long run. The most important thing is to provide the right information, to the right person at the right time. Best of luck to Dr Neil Paul and his team to take the first step forward.