How we’re finding a common language with the US on health data: Fruitful discussions across the pond

Blog post by Mo Dewji, National Clinical Advisor (primary care), Improvement Capability Directorate, NHS Improving Quality

The UK and the US operate very different healthcare systems, as we know. But we also have much in common, including a common language, similar clinical treatments and procedures and of course patients with comparable conditions. Could we do more to learn from each others’ experience?

This was the starting point for an historic agreement two years ago between Barack Obama and David Cameron to share health information technology and data across the continents. Last year, after much intensive preparation work, we identified four areas where the mining of data could yield big pay-offs for patient care. And this year, following the signing of an official Memorandum of Understanding, we have produced our first results – though they were not always what we had expected.

We chose four areas to conduct our “deep dive” for data: hip and knee replacements, stroke, dementia and depression. And we focused on what we felt was one of the richest seams – patient related outcome measurements or PROMs.

One of the big questions when extracting information from different sources is whether you’re actually measuring the same thing. Are these apples and apples or actually apples and pears? And even if they are all apples, are they the same sort? Or are we comparing Braeburns with Golden Delicious?

We soon discovered the reality of this in our investigation of stroke. Although we all think we know what a stroke is, we soon discovered that it was defined in different ways on each side of the Atlantic. We also found that the treatments weren’t completely aligned and – even more critically – the PROMs measurements were varied.

On the face of it the patient-focused data for hip and knee replacements was much stronger and initially we probably had the highest hopes for real progress here: the entry point for treatment is similar in the UK and US and our measurement system in this country appeared to be easily transferable.

Unfortunately it turned out we weren’t able to use that system and although we substituted a similar one, developed in Minnesota, we soon discovered how slight differences in wording can significantly change how the patient perceives their experience. We were comparing Braeburns with Golden Delicious.

This also demonstrated the truth of GB Shaw’s famous dictum that we are two nations divided by a common language. We now realise that if we want to find common measures of the patient experience on both sides of the pond we will need experts in terminology to ensure we all understand the same things when the same words are used.

Probably our least fruitful line of inquiry was dementia. Despite enormous determination in both countries to tackle this escalating problem, hard information about the patient experience is still thin on the ground. This is something we will be exploring further in the future.

Surprisingly, the area that yielded the most promising results turned out to be depression – a topic that might have been thought in advance to be the trickiest to pin down and define.

But we soon discovered that clinicians in both countries use the same measure – PHQ-9 – to gauge people’s level of depression. What is more they apply a similar scale to establish when someone enters and leaves the care system and how quickly they recover. Even more encouragingly, the terminology used is almost exactly the same – and means the same!

We are now planning to run pilots in both England and the US to try and turn this information into useable knowledge. We are very hopeful this can help to identify which depression treatments are most effective and how this can help individuals to recover more quickly. Clearly this could have enormous implications for both the individual and society.

Our work over the last two years has served to emphasise the importance of the human factor in data collection. By that I mean not only the primacy of the patient experience but also the critical importance of human interpretation of the words and phrases we use. But when man and machine are working together effectively, we have a lot to be optimistic about.

 

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