Coded data ?
There has been a long held view, even mantra, amongst health informaticians that data should be “structured” and “coded” if it is to be harnessed for clinical decision support, adverse event prevention, and for research purposes. One trouble is, the concept of “coded” data means different things to different people.
Australia was at the international forefront of “coding” clinical data when it established the National Health Data Dictionary, first published as the National Minimum Data Set – Institutional Health Care in September 1989. Back then, most of the data collected according to the data dictionary was probably collected manually, with paper forms ( and perhaps that is still true today?). The reason codes were used was to ease the burden of data entry. The purpose of collecting the coded data was not clinical. It was to meet the needs of statistical aggregation for reporting.
Somehow, as electronic collection of data for clinical use became more prevalent, and the notion of e-health that embraces the sharing of clinical data gained acceptance, many of the people and practices associated with “coding” for secondary use found their way into the messaging specifications of HL7 and beyond. There has been some implicit assumption that what is good for the goose is good for the gander. E-health has a long way to catch up to the well-oiled reporting world, but hopefully one day it will catch up.
But if clinical data is to be captured and reused safely, efficiently and effectively for patient care, then the “coding” practices of last century need to be avoided for e-health. The National Health Data Dictionary may serve statisticians well. The codesets that are embodied therein will not serve the clinical community well. Those interested in part of my justification for this stance are welcome to view this presentation on the subject.
Then they should call it the National Statistical Health Data Dictionary.
Anonymous Sept 13 8.03pm is right.
A more accurate description would be the national STATISTICAL health data dictionary.
Though consider
(i) NHDD was named when it was originally produced and at that time there was no other national health data to speak of – so no need to distinguish it from something else that didn’t exist (and largely still doesn’t. We’re only now beginning to look at clinical health information; Perhaps we’ll eventually have a companion National Clinical eHealth Information Dictionary?)
(ii) Other health data products which describe themselves as STATISTICAL are still – persistently – misunderstood and misused as instruments suited to clinical and eHealth initiatives (cf: the International STATISTICAL Classification of Diseaes, ICD).
It would seem a rose by any other name…..