'Original text' for scales and scores/ instruments?

Clinical
1

I had a chat with @vanessap of Better about the challenges of representing some ‘long-winded’ questions (and some answers) in some scales and scores or other formal ‘instruments’

https://eq-5d-tablet-pda-demo.euroqol.org/usa/demo.html?device=t&app=3

The normal openEHR approach is to say that when we give elements names, we are not trying to define exactly wht should be in the UI - te Element names are more like database column names - we want to accurately reflect the meaning of the datappint but not necessarily the full original text.

That does lead to a couple of issues.

  1. It is harder to allow form builder tools and other downstream visualisations to automatically present the long form to the text ‘original text’ - there are workarounds such as putting the original text in annotations or Descriptions we we use descriptions pretty variably and it’s hard to pick up that this is actually an original text, rather than some of other form of explanatory description. Annotations are also not translatable.

  2. Beyond the UI issue (arguably not part of the openEHR remit) , if we see archetypes as great ways’s tor represent shard clinical knoweldge, then the score authors do probably have a good argument thta in some fashion we should represent them faithfully both from a data prespective, and where they maty argues, the original text is carefully chosen by them and should be carefully translated.

So I think there are some good arguments for having a very specific place inside archetypes to capture ‘original text’, optionally when the element name does not replicate that , for good reasons. That would give instrument/scale authors some confidence that anyone picking up an archetype would be using it safely and correctly , and it makes the downstream job of turning archetypes into apps much easier.

Fortunatately, it looks like there might be a pretty easy solution, as we can extend the terminology part of ADL beyond “text”, “description” and “comment” to add other custom attributes. In fact 'comment" is already an extension beyond the base specification.

Vanessa and I had a play at adding “original_text” in the ADL and it is handled properly when saving. reading archetypes and through into templates, so we think this may be possible to add to the various tools without a huge amount of effort, or any changes to the specifications.

Just to be clear the original_text is not intended to end up in the record - it is just carried in the archetypes design, and into templates so it can be used for other purposes.

Something like this …

["at0027"] = <
					text = <"During the past week had difficulty in concentrating">
					description = <"Has the patient had difficulty in concentrating">
                                        original_text = <"During the past week: Have you had difficulty in concentrating on things, like reading a newspaper or watching television?">
		 >

Vanessa has identified other ‘markers’ that might also be worth considering like question number but these can be handled with Annotations as they do not need to be multilingual. We might come back to developing some standard ways of doing that also.

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