Mind The Gap – Electronic Health Records Babel

Studies demonstrating the challenges of embedding interoperable Electronic Health Records are as inevitable as Christmas. Clearly, we’ve all been on Santa’s naughty list, because after decades joined-up thinking on our health records feels as far off as ever. In fact, we’ve been so naughty that it feels like the central European Krampus is out to punish patients with burdensome IT systems that fail to talk to each other.

PATIENTS FILL THE GAP 

As populations age, and we as individuals accumulate chronic conditions and co-morbidities, clinical data siloes just don’t work. Electronic Health Records should be the glue that holds together all aspects of a patient’s health, but it can feel that the systems are glued up.

Where there is political will and resourcing, typically the Nordics, Electronic Health Records tend to have embedded better. In other first world countries, it’s been more of a picture of false starts, fragmentation and confusion.

Pragmatically, individual patients can turn to apps to manage their own conditions. Equally, they can turn to patient groups to fight the case for integrated, interoperable, safe and private Electronic Health Records.

EUROPEAN PATIENTS’ FORUM – ADVOCATING FOR CHANGE

For example, the European Patients’ Forum (EPF) has for many years conducted patient surveys into Electronic Health Records. It is a central part of the EPF’s advocacy activity, including its recent manifesto for the European Parliamentary elections and new Commissioners.

Commenting on EU recommendations on Electronic Health Records, the EPF highlighted the challenge of patients being able to access and contribute to their records:

“Preliminary results of a recent survey we conducted show that many patients across the EU either do not have access to their EHRs or were not aware of it. In addition, EHR information should be easily findable and understandable. Lastly, one feature that is very underutilised is that of patients being able to interact with their EHR, by providing comments and new information, reporting inaccuracies, etc. Interactivity is essential to maximise the benefits of EHRs.”  – European Patients Forum

SHOULD PATIENTS BE PATIENT?

It is perhaps slightly surreal that when looking after your car, booking a hotel, or buying almost anything online, Customer Relationship Management software keeps a tight grip on your records and profiling. But when it comes to the life and death, quality of life decisions that should be informed by Electronic Health Records, it’s a far messier situation.

A recent example was published in the BMJ Open, conducted primarily by teams at the UK’s Imperial College’s Institute of Global Health Innovation (IGHI). Their focus was on records practice in the UK National Health Service. Our own experience as patients and carers tells us that even within the same hospital, records don’t join up. The researchers found that:

  • 10% were using multiple systems within the same hospital
  • 23% were still using paper records 

When it comes to communication between institutions, the issue is even worse. The team commented:

“Hospitals use several different health record systems and there is minimal co-ordination of health record systems between the hospitals that most commonly share the care of patients.”

The data are pretty stark. In a year from April 2017-2018 the study found that:

 “On 11 million occasions, patients attended a hospital that could not access full medical information from their previous hospital visit.”

Launching the study, Lord Ara Darzi, lead author and co-director of the IGHI, said: 

“Electronic health records have been heralded as a solution to increasingly stretched healthcare systems, yet our research shows that the challenge is far greater than simple adoption of this innovation. It is vital that policy-makers act with urgency to unify fragmented systems and promote better data sharing in areas where it is needed most or risk the safety of patients.” – Lord Ara Darzi, Institute of Global Health Innovation (IGHI).

WHERE NEXT FOR ELECTRONIC HEALTH RECORDS?

I’m pretty resigned to the fact that I’ll not benefit a fully integrated UK Electronic Health Record system in my lifetime. I’m now more worried that it won’t happen in the lifespan of my teenage daughter. 

In theory, the time is right to push for this. The software and technology exist. Data and privacy concerns could be addressed. The resulting big data could give us a much clearer real world understanding of disease prevalence and identify the relative effectiveness of specific treatment pathways. It’s central to prevention, patient-centred care, and targeting increasing scarce healthcare resources to where they are needed most.

Across the first world, there’s political concern about the lack of effective use of EHRs, and some moves towards more effective regulation. On the supply side, there are some dominant players, and thousands of others. If inter-operability of systems becomes the base requirement of buyers, perhaps the industry will choose to deliver. Biblically, God’s reaction to Babel was to divide mankind with multiple languages. On the other hand, the Babel confusion of Electronic Health Records is entirely man-made.

NEXT STEPS:

View the European Patients Forum response to Electronic Health Records reform at…

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View the study into the UK National Health Service use of Electronic Health Records at…

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