What is the future for the electronic medical records aspect of the NHS National Programme for IT (NPfIT) now that the basic consent structure of the project has been altered

The switch from mandatory opt-in to a default of patients opting out has significant implications. Let’s review the background to the decision:

The summary care records (SCR) initiative was intended to allow for our medical details to be available to health professionals from anywhere in the country. The aim is that if we need medical attention at a hospital many miles from home, instant access to details about medical conditions, history or medicines prescribed would improve the quality and speed of care we receive.

Put like that, it is a common sense move with enormous potential benefits – but it has proved to be the most controversial part of an already-controversial programme.

To many, the idea of a nationwide “database” of patient records smacks of Big Brother, and in the light of the recurring government data loss scandals the critics say it is tempting fate to risk widespread access to such sensitive information. And of course, they have a point – even if the widespread assumption that there will be a big super-database is incorrect; the data itself will be distributed across the country, but accessible from anywhere with suitable permissions.

To add to the privacy fears, SCR has become the most delayed part of NPfIT. According to the National Audit Office, it will be at least 2014 before the system is in place – four years late.

And industry speculation increasingly suggests that the technology behind SCR is in serious trouble, and may even be unworkable. Some NHS trusts are already pursuing other options outside of the officially-approved NPfIT applications. 

All that controversy has already been happening on the understanding that SCR assumes patient details will be accessible on an “opt out” basis. This means that our medical records would be available to medical professionals on the system by default, unless we told our GP that we wanted access to be restricted.

In trials of SCR, only a tiny percentage of patients opted out, which was seen by supporters as a boost for the project. But a later study found that most people involved didn’t even know they had the option.

As a result, last week the NHS announced that the consent model was being changed. Patients will now be asked at the point of care before their records are accessed by medical professionals, rather than being automatically accessible. To avoid having their details on the system in the first place, they would have to tell their GP to remove them from the SCR altogether.

This seems like the least controversial option and will be welcomed by critics.

The only way that nationally-accessible records make economic or operational sense is if the vast majority of people are involved. But in the current climate, if asked by GPs what their preference would be, surely only a minority would give full consent.

Given the cost and effort going into SCR, it presents another potential risk in justifying the project.

Political opinion is swinging away from SCR too – the Liberal Democrats have said they would scrap it, the Tories have implied the same.

The NHS needs to make a swift decision on the future of SCR and the role it will play in a connected health service. If it is to succeed, there are many questions that need to be answered before further significant money is spent on what critics fear will be an expensive white elephant.

Author's footnote 25/9/08:

I have made an amendment to this article since it was originally published. Connecting for Health contacted me to point out an error in my understanding of the way that SCR consent will now work. I had interpreted the changes to the model to mean that patient records will not be uploaded to SCR unless they ask to opt in. In fact, patient records will be uploaded to SCR anyway, and people will receive a letter informing them this is the case - at which point they have the right to ask that their records are not used in this way.

The consent change means that at the point of care - in a hospital, for example - the patient has to give their explicit consent before a medical professional can access their SCR. Previously, doctors could view the records without obtaining prior consent. I'm very happy to put the record straight and correct my misunderstanding.