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HB 2912007

Handbook
HB 2912007

Health informaticsGuide to data development in health

This Handbook was prepared by Committee IT-014, Health Informatics. It was approved on behalf of the Council of Standards Australia on 29 June 2007. This Handbook was published on 31 August 2007. The following are represented on Committee IT-014: Australian and New Zealand College of Anaesthetists Australian Association of Pathology Practices Australian Electrical and Electronic Manufacturers Association Australian Health Insurance Association Australian Healthcare Association Australian Information Industry Association Australian Institute of Health & Welfare Australian Institute of Radiography Australian Medical Association Australian Private Hospitals Association Central Queensland University Commonwealth Department of Health and Ageing Consumers Federation of Australia Consumers Health Forum of Australia CSIRO e-Health Research Centre Department of Health (South Australia) Department of Health Western Australia Department of Human Services, Victoria Engineers Australia General Practice Computing Group Health Informatics Society of Australia Health Information Management Association of Australia Health Professions Council Of Australia HL7 Australia Medical Industry Association of Australia Medical Software Industry Association Medicare Australia National Health Information Management Group NSW Health Department Pharmacy Guild of Australia Pharmaceutical Society of Australia Queensland Health Royal Australian and New Zealand College of Radiologists Royal Australian College of General Practitioners Royal Australian College of Medical Administrators Royal Australian and New Zealand College of Obstetricians & Gynaecologists Royal College of Nursing, Australia Royal College of Pathologists of Australasia Society of Hospital Pharmacists of Australia University of Sydney

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Additional Interests: Cerner Corporation Griffith University La Trobe University MacIsaac Informatics McCauley Software National Centre for Classification in Health Smart Internet Technology CRC Westmead Hospital

Standards Australia wishes to acknowledge the participation of the expert individuals that contributed to the development of this Handbook through their representation on the Committee.

Keeping Standards up-to-date

Australian Standards are living documents that reflect progress in science, technology and systems. To maintain their currency, all Standards are periodically reviewed, and new editions are published. Between editions, amendments may be issued. Standards may also be withdrawn. It is important that readers assure themselves they are using a current Standard, which should include any amendments that may have been published since the Standard was published. Detailed information about Australian Standards, drafts, amendments and new projects can be found by visiting www.standards.org.au Standards Australia welcomes suggestions for improvements, and encourages readers to notify us immediately of any apparent inaccuracies or ambiguities. Contact us via email at mail@standards.org.au, or write to Standards Australia, GPO Box 476, Sydney, NSW 2001.

HB 2912007

Handbook
This is a free 8 page sample. Access the full version at http://infostore.saiglobal.com.

Health informaticsGuide to data development in health

First published as HB 2912007.

COPYRIGHT Standards Australia All rights are reserved. No part of this work may be reproduced or copied in any form or by any means, electronic or mechanical, including photocopying, without the written permission of the publisher. Published by Standards Australia GPO Box 476, Sydney, NSW 2001, Australia ISBN 0 7337 8355 4

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PREFACE
This Handbook is based on the Australian Institute of Health and Welfares (AIHW) Guide to data development. For more than a decade, the AIHW has been undertaking data development activities and assisting other organizations with related activities. In doing so, the AIHW has developed a body of expertise in data development. Much of this experience has been distilled into the AIHWs Guide to data development (AIHW 2007). The Standards Australia Sub-Committee IT-014-02 (Health Concept Representation) has adopted this guide with modifications to make it especially relevant to the health informatics area, as data development is becoming an increasingly important activity for both administrative and clinical data collection, management and use.
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The objective of this document is to assist organizations and individuals developing health information systems to develop data items in an appropriate, consistent and managed way. It outlines sound data development practices that incorporate the necessary steps to produce high quality data that meets the needs of all users of the data, and attracts the necessary level of agreement on content and authority behind the data specifications. The document promotes the role of metadata in describing data and the use of data standards to improve consistency in data recording where data consistency and comparability is required. The document takes the reader from the basics of data development to the methodology of good data development and the specification of data elements to describe and standardize data. It describes important principles for the development of quality consistent health data items such as: (a) (b) (c) (d) (e) (f) (f) (g) (h) (i) Creating or adopting data standards is part of data development. National or international standards should be used wherever available and applicable. Data development should be system independent. Be clear about the purpose of the data collection. Data must be fit for purpose. Data development may be incremental. Data development should be mindful of information privacy concerns. Data development should minimize collector/recording burden. Data development should reflect, not drive practice. Create once, use often.

The data development processes outlined, including how data are defined and maintained, is applicable to all health care areas where data are required. This includes the development of clinical data collections, including clinical specialty specific data collections. The processes outlined are relevant for local hospital data collections as well as state/territory or national data collections. It provides information about governance processes, as well as details of how to engage with the national health data dictionary processes, where data standards are to be used in national collections. An example of a state based governance process is also included. Standards Australia wishes to thank the Department of Health and Ageing for their continued financial support in helping us to develop this Handbook.

HB 2912007

CONTENTS
Page FOREWORD.............................................................................................................................. 5 SECTION 1 INTRODUCTION 1.1 SCOPE ........................................................................................................................ 6 1.2 AUDIENCE................................................................................................................. 6 1.3 PURPOSE ................................................................................................................... 6 1.4 STAKEHOLDERS ...................................................................................................... 7 1.5 STRUCTURE OF THE GUIDE .................................................................................. 8
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SECTION 2 DATA DEVELOPMENT OVERVIEW 2.1 GENERAL CONTEXT ............................................................................................... 9 2.2 WHAT IS DATA? ....................................................................................................... 9 2.3 WHAT IS INFORMATION?..................................................................................... 10 2.4 USES OF INFORMATION ....................................................................................... 10 2.5 WHAT IS METADATA? .......................................................................................... 11 2.6 STANDARDS FOR SEMANTICS OF DATA AND REPRESENTATION .............. 12 2.7 WHAT IS A DATA ELEMENT? .............................................................................. 13 2.8 WHAT IS A METADATA REGISTRY? .................................................................. 15 2.9 WHAT IS DATA DEVELOPMENT? ....................................................................... 15 2.10 WHAT IS A DATA SET? ......................................................................................... 17 2.11 DATA DEVELOPMENT AND METADATA .......................................................... 18 2.12 DATA DEVELOPMENT AND DATA STANDARDS............................................. 19 2.13 NATIONAL DATA STANDARDS .......................................................................... 20 2.14 TERMINOLOGY ...................................................................................................... 20 2.15 DATA DEVELOPMENT AND DATA QUALITY................................................... 22 SECTION 3 DATA DEVELOPMENT PRINCIPLES AND METHODOLOGY 3.1 GENERAL ................................................................................................................ 23 3.2 PRINCIPLES OF GOOD DATA DEVELOPMENT ................................................. 23 3.3 THE DATA DEVELOPMENT PROCESS................................................................ 28 3.4 RISK MANAGEMENT............................................................................................. 38 SECTION 4 DEVELOPING DATA ELEMENTS 4.1 GENERAL ................................................................................................................ 40 4.2 THE COMPONENTS OF A DATA ELEMENTFOR THE NON-TECHNICAL PERSON.................................................................................................................... 40 4.3 TECHNICAL SPECIFICATIONS OF A DATA ELEMENT .................................... 41 4.4 FORMULATING DATA ELEMENTS ..................................................................... 49 4.5 GUIDELINES FOR GOOD METADATA ................................................................ 51 SECTION 5 METeOR 5.1 WHAT IS METeOR? ................................................................................................ 60 5.2 PRINCIPLES OF METeOR ...................................................................................... 60 5.3 METeOR METADATA ITEM TYPES AND ATTRIBUTES ................................... 61

HB 2912007

SECTION 6 AGREEMENTS AND GOVERNANCE ARRANGEMENTS FOR DATA STANDARDS 6.1 GENERAL ................................................................................................................ 75 6.2 NATIONAL HEALTH INFORMATION AGREEMENT (NHIA)............................ 75 6.3 NATIONAL HEALTH INFORMATION GOVERNANCE ARRANGEMENTS ..... 76 6.4 STATES AND TERRITORY GOVERNANCE ARRANGEMENTS........................ 78 6.5 LOCAL GOVERNANCE ARRANGEMENTS ......................................................... 78 SECTION 7 CONTACT DETAILS AND BIBLIOGRAPHY 7.1 WHOM TO CONTACT FOR HELP ......................................................................... 80 7.2 REFERENCES .......................................................................................................... 81

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HB 2912007

FOREWORD
With the emergence of electronic health records to improve communication and administrative information between health care professionals and other users, it is important to develop data in a standard way to optimize use of information from collected data and to prevent errors in system use. Data are fundamental components of information. If information is to be shared and used for decision making then data must be available, reliable, accurate and collected to agreed data standards. Data development is the process of building a data set for a specific purpose. The process includes identifying what data are required and how feasible it is to obtain the data. It includes developing or adopting data standards in consultation with stakeholders to ensure uniform data collection and reporting, and obtaining authoritative approval for the data set. While data development activities are undertaken by many organizations, information about the process of data development is less readily available. In fact it may come as a surprise to many that data development requires a considerable investment of time, staff and other resources, or even that there is a methodology to data development, which includes the development of data standards to support consistent data collection.

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HB 2912007

STANDARDS AUSTRALIA

Handbook Health informaticsGuide to data development in health

SECT ION
1.1 SCOPE

I NTRODU CT IO N

This guide aims to document the basics of data development and the steps to follow when developing data.
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Data development is described and explained within the context of health data, using health related examples to illustrate the key points. Referenced and related documents are listed in a bibliography in Section 7. 1.2 AUDIENCE This guide provides a starting point for anyone undertaking data development with the intention of collecting or using data and for those interested in how data (and metadata) is developed and structured. The audience may include: (a) Data developers who are seeking knowledge of the process, principles and methodology of data development so as to help them avoid the problems and pitfalls associated with data development. You may be a nurse, or a doctor developing a form or designing a screen to collect data or developing more sophisticated data systems such as decision support systems. Users of data sets who may be interested in understanding data (and metadata), including how it is developed and structured. Users of data sets include those using the data for secondary purposes such as for research and statistical purposes. Service providers, including doctors and nurses, who may collect clinical and administrative data, as part of service provision. System developers including those involved in developing database specifications, data exchange mechanisms and validating programs. System development is expensive and time-consuming. This makes it even more important that data from these systems are based on sound data development principles that meet standards agreed upon by users and endorsed by authoritative bodies. You may be an IT professional or information manager, developing data extraction queries, data exchange or messaging systems or data mining.

(b)

(c) (d)

1.3 PURPOSE The guide focuses on key issues that must be addressed for a successful data development and data collection. The guide will not answer every question or solve every data development problem but it provides the foundations for good data development work. The guide provides: (a) A methodology for data development, from conception to a fully developed data set specification and accompanying data standards.

Standards Australia

www.standards.org.au

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HB 291-2007, Health informatics - Guide to data development in health

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