Volume 3. Maternal and Neonatal Datasets 

Volume Editor:  Rupert Fawdry (So far)

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Discussion Links: Pending

 

"If you wish to create a good computer system,

start with a comprehensive analysis of the paperwork"

 

Reason for the EEPD

 

“On both technical and financial grounds, integrating (or even adequately linking) complex independent flow-patterned databases is virtually always impossible. For this simple reason, structured Electronic Patient Records (EPRs) will only attain their true potential to improve the quality of patient care and reduce the risk of human errors, without unsustainable data re-entry overload, when - following intense, open, web-based discussions, their detailed, logically and chronologically arranged, flow-patterned questions and the full range of all allowable answer-options - [unlike traditional coding, always including whenever needed “Unknown (Free Text)” and “Other (Free Text)”] - are, by stages, taking account of as many interested parties as possible, individual question by individual question, internationally standardised.”

 

Computers will never, ever, cost-effectively cope with the following chaos of incompatible paper and electronic datasets.   What follows is my best attempt so far at some kind of classification: 

 

Summary

Cost effective Perinatal computer systems will never be able to cope with the number and variations of data items which I started to document in the Nightmare documents. With a maximum U.K. market of about 200 such systems the cost of the detailed programming to cope with incompatible data will always be prohibitive.

The logical next step was therefore to gradually build up a collection of official paper based data sets, either proposed or currently required, to see how all these variations might be slowly reconciled into a single universal set of electronic questions and all allowable answers.  This essential foundation set of documents has slowly, after 30 years experience, led to what is now Volume III of the EEPD. 

Few tasks in my whole life have proved to be more difficult or more time consuming than this part of the EEPD,  mainly because of the huge variety of relevant material and thus the difficulty in creating any logical classification.  The paper documents collected almost always contain data items in fairly random order and which overlapped between different Clinical, Statistical, Audit, Management and Individual Patient Care requirements; and between “Mother” items (One set per Mother’s Birth Event), “Baby” items (One set per Baby) and Special Neonatal Care Items (One set per Neonate requiring Intensive Care) etc

What follows is my best attempt so far at some kind of classification.

This massive task has also turned out to be the best way to try to take full account of the many stake-holders wishing to use maternity and neonatal data; and should really have been done in detail before the creation of the very earliest Electronic Maternity and Neonatal IT systems!  A task which, in my own case should have been done, had I had the time and resources, before I designed the original Protos/iSoft Maternity IT system back in 1990!

Although many of these data-sets are now no longer in use, they remain valuable, both because they were the original basis for what has become Volume IV of the EEPD (The Resource Document) and Volume V (The Logical Priority Core Data Definitions); but, more importantly, because even outdated versions provide permanent insights as to the different perspectives of those needing to use the data.

Earlier versions of what is now the EEPD formed the “knowledge engineering” basis, amongst other projects, for a) the Protos/iSoft maternity computer system (the most successful commercially marketed U.K. maternity computer system), b) the West Midlands Perinatal Institute MANNERS Maternity data set and c) the Government funded Maternity Care Data Project among several other initiatives. (See EEPD. Appendix A. Initiatives (In Preparation)  www.fawdry.info/00a_initiatives.php   ???

(Updated 5 Sept 2010)

Request for any Missing or Outdated Data-sets.  

Help Needed

The future of cost-effective electronic patient records will eventually depend on high quality international data input standardisation. Open access world-wide, through the EEPD, to as many current incompatible paper or electronic data-sets relevant to perinatal care as possible, will greatly facilitate this unavoidable process.

If you can provide an electronic, or paper, version of any up-dated or missing datasets; especially the full documentation for any complex, detailed, chronologically arranged, flow-patterned commercial maternity systems, please get in touch urgently. The wording found in

www.fawdry.info/eepd/03_dat/0_pdfs/DataSetNeed.pdf√ or 

www.fawdry.info/eepd/03_dat/0_pdfs/FlowNeed.pdf√ or 

www.fawdry.info/eepd/03_dat/0_pdfs/UpdateNeed.pdf√ 

still occurs far too often.  

                                                (Updated 5 Sept 2010)

 

Introduction

At first collecting datasets seemed like a relatively simple task, and indeed was an essential basis for the creation of any good maternity system such as the design for the original Protos maternity system.  My collection started with documenting what was required for Birth Notification, Birth Registration and the original Korner committee recommendations.

As soon as Protos sold maternity computer systems in Scotland, note needed to be taken of the Scottish SMR datasets.

But since then the task has again grown and grown.

And confusion became greater and greater with more and more different data sets being documented.

Almost all had the characteristic that the U.K. tax-payer was ultimately required to provide funding for the data entry work of the majority of these different datasets! 

Yet almost all of them as illustrated in www.fawdry.info/eepd/00_ima/ohps/Mountain.pdf√ are virtually independent in their data selection and definitions and therefore required fresh data entry onto each different computer system!  The problem is discussed in more detail in www.fawdry.info/eepd/01_ess/b_eprs/B01_Railways.pdf√

Even more worrying was the fact that many of these data collections, (e.g. The Cardiff Births Survey, the Oxford maternity database) have been running for many years and have required major human efforts and taxpayers funds to maintain, yet it has proved almost impossible for me to find out 

a) When did that database start collecting data?

b) Is it still running?

c) What data items have form part of that database?

d) Is the data still accessible.  If so how and by whom?

Despite working first in Cardiff for six months and later near Oxford for ten months it proved practically impossible to find out the answers to the above crucial questions.  The originators of the data collection project had often retired or moved on, and funding had been a problem, or the old database had been superseded by a new computer system which required different questions and answers. Again the selection and wording of each question and each answer seemed universally to depend on the particular views of those directly involved the creation of each dataset.  (For a proposed solution see the Introduction to Volume V “Logical Priority”)

It may be objected that several of the datasets included in the EEPD are either outdated or were only proposals; but despite the fact that the item selection and wording in such datasets seems almost arbitrary, they remain useful a) in providing some insight of the kind of data required by each special interest group and b) more importantly, they provided the essential material for deciding on the best content and wording both for the Resource Document (Volume VI) and the Logical Priority document  (Volume V)

Any offers to add to this personal, and somewhat random, selection are very welcome. (in MS Word “.doc”, Mac “.pages”, “.pdf” or  “.txt” if possible)

Simple Test; Chronological Re-organisation.

Whenever it is intended that a dataset should ever have any reasonable relationship to an electronic patient record or to be compared with any other similar database, it must first be re-organised until it is:

i) Logically Divided. Every Mother/Birth Event (once for each mother), Every Baby (once for every baby or fetus), Every Special Care Baby, Every Anaesthetic etc

ii) set out Chronologically and 

iii) Flow-Patterned.

If a dataset is presented without these three crucial characteristics, then

a)  It seems that no-one involved in creating the dataset has bothered to think about it’s relationship to other obligatory datasets and to any subsequent Electronic Patient Record Database

b)  As a result it is almost impossible for clinicians to do any reasonably efficient quality checks.

How sad, not to have done that such re-sorting when each dataset is first proposed; and not to have taken any adequate account of the very simple principles set out in:  Credible Perinatal Datasets

So far, apart from my “Logical Prioritisation” dataset, i.e. the EEPD Volume V, I have not come across a single open source perinatal dataset anywhere, which is thus chronologically arranged and flow-patterned.  Yet all complex maternity systems such as iSoft/Protos or Euroking or Terranova or TRAX depend on such flow-patterned datasets in order to function but their versions are not yet openly available; and may even be specifically described as commercially confidential.

In future all health service purchasers of any clinical IT system must demand that such systems will be considered for purchase only if all the questions, and all allowable answer options, in flow-patterned, logical and chronological order, are in the public domain; and are available on the internet and in a printed out format for full discussion by all the front-line users, before any contracts are signed.

The present chaos will inevitably continue until this becomes mandatory.

A typical example of a total failure to consider the needs of other datasets is provided by the “New” Birth Notification which can be seen both in it’s original form; and then as re-sorted chronologically at  www.fawdry.info/eepd/03_dat/e_allbirths/E21_BNot01.pdf√   

Rupert Fawdry. (Updated 5 Sept 2010)