Inside e-health on how health records are getting personal

In his regular column, technology journalist Jon Hoeksma muses on the question of who owns a health record – and why some recent developments are making this a pressing question.

The question of who ‘owns’ a health record might seem academic, but it goes to the heart of how you design a digital healthcare system, especially if you are serious about placing individuals in control.

In the world of brown Lloyd George envelopes – which still exist alongside electronic records - one formula was that the Secretary of State owned the physical record but the GP owned the words written on it. The patient didn’t really get a look in. And if they did, by chance, get to see their records, they might well struggle to read the doctors’ handwriting anyway.

EPRs: vital for teams

The world of healthcare has become more complex and interdependent. It may still be very hierarchical, but it is becoming a far more collaborative activity.

Care is now often delivered by teams of healthcare professionals, who need to co-ordinate their activities and share information. They need to know, for instance, what pills a patient has been prescribed – “blue ones” being not quite enough information. "Teams of healthcare professionals need to know, for instance, what pills a patient has been prescribed – “blue ones” being not quite enough information."

A record that allows effective collaborative care can, in theory, be achieved in two ways. First, by creating a record that can, with appropriate consent and security protections, be shared between healthcare professionals.

To be clinically useful, such a record needs to be the primary record used by all the health professionals involved in providing an individual’s care; implying that it needs to augment or supplant systems already in use.

Most existing electronic patient record systems (EPRs) generate records for a particular practice or hospital, so moving to a shared record is a tall order.

However, this is precisely what the National Programme for IT in the NHS (NPfIT) is trying to progress towards with the NHS Care Records Service (NHS CRS). The potential benefits are huge, but it’s a formidable challenge – and one that’s already running years late.

But what about the patient?

Even if NHS CRS can eventually be delivered, it will still remain an “NHS” record – one intended to be used by health professionals, to provide activity and management data, and to support clinical research.

All these uses have great value, but they leave the patient as a passive recipient of healthcare. In many, many cases patients may be entirely happy with this. But in a world of increasingly well-informed and empowered consumers, many others may not be so detached about who can see what elements of their healthcare information, or willing to assume that their records will be accurate and used properly.

One of the dirty secrets of current NHS records is the number of errors they contain. Small scale studies at GP practices, giving patients full access to their record, have found high rates of errors and outright dangerous mistakes.

Proponents of patient–held records argue that individuals need to view their records in order to correct such errors – and to give informed consent about how they are to be used.

So the second way of achieving a shared record is to start from the assumption that the individual should be in control and empower them to decide who they want to share their personal health record (PHR) with, and what information – such as a termination of pregnancy ten years ago - they don’t want to share. "We could also start from the assumption that the individual should be in control and empower them to decide who they want to share their personal health record with."

Again, for many individuals consent for data sharing will be of little interest. Many people will just want their doctor to have all the information available and to decide what to do with it. But even if 99 per cent of individuals tick “let my doctor decide”, they will still have made an active choice; one they can change in the future.

There are also some thorny clinical and ethical considerations. Clinicians rightly argue that there is some information that it is dangerous for patients to have and that some individuals – for example those with potentially violent or self-harming conditions – will need protection.

Taking control

But beyond this, another attraction of a PHR is that it also offers a tool for enabling individuals to take control of their healthcare. Microsoft recently launched HealthVault in the US that allows people to collect web and health record information, to download data from personal health monitors, and to manage chronic conditions.

Being able to better manage personal health information – to have access to knowledge - is vital in an increasingly complex and competitive healthcare system, in which patients are expected to exercise choices over different treatments and providers.

The NHS IT programme is developing something that could be a PHR: HealthSpace. But the big question is whether it is intended as a summary, a comprehensive clinical record or a personal health tool for the future?

• More information about the launch of HealthVault is available on the NHS Resource Centre 

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