Health Information Technology Standards Series Editor: Tim Benson Tim Benson Grahame Grieve Principles of Health Interoperability FHIR, HL7 and SNOMED CT Fourth Edition Health Information Technology Standards Series Editor Tim Benson R-Outcomes Ltd London, UK Health information technology is one of the fastest growing industry sectors. The purpose of this book series is to provide monographs covering the rationale, content and use of these and other standards to help bridge the gap between the need for and availability of qualified and knowledgeable staff. This series will be focused on health informatics technology standards and the technology driving change in health IT. It will appeal to the traditional informatics market, but also cross over into more technical disciplines, but without leaving the remit that this is to expand knowledge in healthcare IT. It will comprise a set of single-author, practically focused, academically driven concise reference monographs on the leading standards and their application. Each volume will focus on one or more specific standards and explain how to use each one individually or in combination. This provides a tight focus for each book. The aim is to offer a set of “must have” references on the widely used standards, and in particular those mandated by the ONC. More information about this series at http://www.springer.com/series/10471 Tim Benson • Grahame Grieve Principles of Health Interoperability FHIR, HL7 and SNOMED CT Fourth Edition Tim Benson Grahame Grieve R-Outcomes Ltd Health Intersections Pty Ltd Newbury, UK Melbourne, VIC, Australia ISSN 2199-2517 ISSN 2199-2525 (electronic) Health Information Technology Standards ISBN 978-3-030-56882-5 ISBN 978-3-030-56883-2 (eBook) https://doi.org/10.1007/978-3-030-56883-2 © Springer Nature Switzerland AG 2016, 2021 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Foreword Principles of Health Interoperability: FHIR HL7 and SNOMED CT offers a reality tested view of interoperability and the activities that are required for success in link- ing clinical and financial data flows. Importantly, Tim and Grahame are not just folks who have implemented systems; they are two of the pioneers who built the standards we use (SNOMED and FHIR, respectively) to begin with. Thinking about the value of this book requires pondering why interoperability in healthcare is hard. Many commentators have tried to reason by analogy using financial services as a starting point—typically stating “I can use my ATM card anywhere on the planet, why can’t I get my medical record?” ATM transactions are inherently representable as limited sets of numbers and a modest amount of metadata. Biology is infinitely complex—we simply do not know what every molecule in every cell does and rep- resenting the three-dimensional interactions of each atom in the body is beyond computation. So interoperability in healthcare is inherently an exercise in extreme reductionism. Many clinicians rightfully expect all data to be simply available. While much data can be entered by machines such as MRI scanners or lab analyzers, much criti- cal information comes to clinicians from talking with and interacting with patients. Speech recognition and natural language processing have made strong advances but ultimately we still require human brains to gather and enter critical data. The time to do this data entry and organization is not free—as with any system where one is fighting entropy; it requires injecting energy, in particular thoughtful (and expen- sive) clinician time. But how can these humans we guided enter this data in a way that is “interoperable”? So we see interoperability is not a simple exercise in data transformation, or an exercise in “more regular expressions please,” but as a computational activity requir- ing compression of information to a level that is tractable. It must also be done in a way that is respectful of clinician time both in retrieving the information and more importantly in entering the information. Tim and Grahame provide a richly thought-provoking narrative on how to reach these almost inherently unachievable goals. They have been successfully working to move interoperability forward for many years. This is the fourth edition of the book. What has changed? When discussions of interoperability were first raised in healthcare, it was a monumental challenge to build any networking infrastructure. Today, we live in a world rich in bandwidth, but v vi Foreword more importantly in a world where the communications are not just between clini- cians, but between and among patients. Today, the electronic health record still remains the centerpiece of interoperability. But we are moving into a world with multiple types of interactions, where clinical information needs to flow. We are moving into a world, where patients expect to be stewards and controllers of their own data—a critical requirement for healthcare that is truly patient-centered as opposed to medical care today which is primarily the creation of providers, payers, and the governmental regulations that direct these third parties. RESTful, JSON, and FHIR are becoming the lingua franca of a more encompassing view of health and healthcare. Be ready as Tim and Graham lead the way to this modern approach to interoperability. Interoperability in healthcare is a global movement and standards are being developed across the planet. This is a theme throughout the book. Many countries are working to enable modern support for interoperability and hence health to their citizens. We, in the USA at the Office of the National Coordinator for Health Information Technology (a division of the US Department of Health and Human Services), have been proud to play a key role in implementing the bipartisan vision for interoperability embodied in the US law known as the 21st Century Cures Act, and we are delighted to be able to work with global standards community to achieve this vision. Please enjoy this book—a wonderful roadmap to modern healthcare. Thank you Tim and Grahame. National Coordinator for Health Information Technology Donald W. Rucker US Department of Health and Human Services, Washington, DC, USA Preface This fourth edition of Principles of Health Informatics has been updated, reordered, and revised to focus on the health interoperability standards that are most important in the 2020s, with an emphasis on HL7 FHIR (Fast Healthcare Interoperability Resources). The success of FHIR has already exceeded expectations. It is now man- dated for large-scale use in many countries, including the USA and the UK. Healthcare is about to enter a period of tumultuous change driven by the wider trends driving rapid change in society, partly driven by digital disruption and social media. Health informatics sits right at the middle, the intersection between manage- ment and business, clinical knowledge and process, and technology and information management. It is our hope that this book makes a small contribution towards help- ing us all meet the challenge. Interoperability standards and implementation guides have voluminous docu- mentation. Our intention is to introduce the core stable principles that change rarely in a relatively concise way. This book complements longer guides which are tai- lored to local needs and are often updated frequently. The introduction to clinical terminology has been promoted (Chap. 3), and there is a new chapter on safety (Chap. 4). Chapters on FHIR (Fast healthcare Interoperability Resources) have been extended, updated for FHIR Release 4 and moved forward (Chaps. 5–11), and the section on LOINC has been extended to a full chapter (Chap. 17). Chapters on privacy, models, UML, BPMN, XML and JSON, SDOs, and HL7 v3 have been moved towards the back. Newbury, UK Tim Benson Melbourne, VIC, Australia Grahame Grieve vii Contents Part I P rinciples of Health Interoperability 1 The Health Information Revolution . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Healthcare Is Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 What People Want . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Person-Centered Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Information Handling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Use of Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Clinical Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Success and Failure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 NASSS Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Lessons from History . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 2 Why Interoperability Is Hard . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Layers of Interoperability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Why Standards Are Needed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 Combinatorial Explosion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Translations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Electronic Health Records . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 ISO 13606 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 Problem-Oriented Medical Records . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 The Devil Is in the Detail . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Name and Address . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 Clinical Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Complexity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Complexity Creates Errors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Users and Vendors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 Change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 Change Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 Behaviour Change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 ix x Contents 3 Clinical Terminology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41 Medical Language . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41 Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41 Medical Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42 Coding and Classification . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 Coding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 Classification . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44 Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45 User Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48 Model of Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49 Model of Meaning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52 Desiderata . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54 The Chocolate Teapot . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56 A Fictitious Example . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60 4 Safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63 First, Do No Harm . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63 Safety Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64 Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 Impact of Change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 Culture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67 London Protocol . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67 Application Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69 FHIR Safety Checklist . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75 Part II FHIR 5 Principles of FHIR . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79 Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79 Origins . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80 APIs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81 RESTful Interfaces . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 82 Repository . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83 Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85 Resource Types . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85 References Between Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90 Extensibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91 Narrative . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94 FHIR Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96 Relationships with Other Organisations . . . . . . . . . . . . . . . . . . . . . . . . 97 The FHIR Manifesto . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98 FHIR Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100