Health Data Processing: Systemic Approaches

Health Data Processing

Systemic Approaches

Marius Fieschi

with the contribution of

Jean-Charles Dufour

Health Industrialization Set

coordinated by

Bruno Salgues

Table of Contents

Cover image

Title page

Dedication

Copyright

Preface

Introduction

Memorization of information intended for a single category of actors or a single specialty is of little added value

The complexity of human activity cannot find satisfactory answers in siloed systems

Confronting the heterogeneity of data and systems

Reusing data is necessary and provides high added value

Design and implementation of flexible information systems

Modeling as a way of responding to issues of flexibility

Modeling to develop

Principles for analyzing and implementing flexible information systems

Current implementation of these principles

Strategic alignment of information systems is confirmed but all too often not achieved

1: Understanding the Fundamental Nature of Information and its Processing

Abstract

1.1 Introduction

1.2 Data, knowledge and information

1.3 Data structures

1.4 Data models

1.5 Qualities that make information valuable

1.6 Improving the quality of data

1.7 Uses of patient data

1.8 Processing information, applications, components and processes

2: A Few Questions on Information Sharing

Abstract

2.1 Introduction

2.2 Twelve questions for better defining sharing and its objectives

2.3 Organization of information sharing is a prerequisite of technological choice

2.4 Summary and conclusion

3: The Place of Healthcare Delivery Processes in Information Systems

Abstract

3.1 Introduction

3.2 The concept of the process

3.3 Modeling and the presentation of processes

3.4 Processes and procedures

3.5 Interests and limitations of the process-based approach

3.6 Conclusion

4: The Quality of the Urbanization of the Information System is Central to its Performance

Abstract

4.1 Introduction

4.2 Changes to the scope of information systems must be anticipated

4.3 The dimensions of interoperability

4.4 Interoperability is central to the development of practices

4.5 The shared reference terminology of information systems

4.6 Conclusion

5: Reference Terminologies in Healthcare Information Systems

Abstract

5.1 Introduction

5.2 The management of reference terminologies must comply with the rules of best practice

5.3 Specialized reference terminologies

5.4 General purpose reference terminologies

5.5 Implementing reference terminologies in the context of urbanizing information systems

5.6 Conclusion

6: Patient Identification in Healthcare Information Systems

Abstract

6.1 Introduction

6.2 Basic concepts in patient identification

6.3 Establishing a unique, common and universal identifying number would be ideal

6.4 The proposed solutions focus on a simple identification model and efficient and reliable matching of identities

6.5 The de-identification of data

7: Information System Security and Data Protection

Abstract

7.1 Introduction: the need for security

7.2 Security policies as protection against threats to information systems

7.3 Risk assessment and choosing the measures to be taken

7.4 Protecting personal data

7.5 Conclusion

8: Knowledge Management and Medical Decision Support

Abstract

8.1 Introduction

8.2 A brief historical overview and the lessons learned [GRE 07]

8.3 Intelligent systems

8.4 Evidence-based medicine: from literature to clinical action

8.5 Standards for representing knowledge are essential to integrating best-practice guidelines into care processes

8.6 Conclusion

9: Managing and Integrating Clinical Data: Health Records

Abstract

9.1 Introduction

9.2 A wealth of terminology to refer to patient data and how it is managed

9.3 Access to patient data is essential to improving the care process

9.4 The a priori structuring of records has kept methodologists and healthcare professionals busy for 40 years

9.5 Data description, use of reference terminologies and professional access

9.6 The interoperability of data and knowledge in care processes is central to designing health records

9.7 The characteristics of new generations of health record management systems

9.8 The Continuity of Care Maturity Model

9.9 Conclusion

10: Managing and Integrating Laboratory Data and Functional Investigations

Abstract

10.1 Introduction

10.2 The laboratory information system (LIS)

10.3 Development of the regulatory context for biology laboratories

10.4 Having a reference terminology for biological procedures is central to designing LIS

10.5 Have a knowledge base (engine for prescription rules, act protocols, etc.)

10.6 Integrating biological data in patient records

11: Managing and Integrating Medical Images

Abstract

11.1 Introduction

11.2 The picture archiving and communication system (PACS)

11.3 Managing medical images

11.4 The mutualization of image management and the functions of PACS

12: Managing and Integrating Telemedicine and Telehealth

Abstract

12.1 Introduction

12.2 Clinical communication and telemedicine

12.3 Healthcare services on the Web, e-health

12.4 Regional telehealth platforms

12.5 Connected health tools

12.6 Conclusion

13: Integrating Extra-hospital Care Data

Abstract

13.1 Introduction

13.2 Highlights from the USA

13.3 Some initiatives and programs in France

13.4 Conclusion

14: Reusing Data in Healthcare

Abstract

14.1 Introduction

14.2 Making healthcare data usable in order to be useful

14.3 A standard, comprehensible, interoperable data model

14.4 Means of integrating data

14.5 Reuse of big data, connected objects, social networks

14.6 Conclusion

15: Integrating Data for Management and Decision Analysis

Abstract

15.1 Introduction

15.2 The processing chain of decision-making analysis

15.3 Building data warehouses

15.4 The dashboard of an establishment or an institution

15.5 Hospital financing and its national management in France

15.6 Other examples of indicators for other kinds of management: international experiences in regulating quality and efficiency

15.7 Conclusion

16: Data for Epidemiology and Public Health, and Big Data

Abstract

16.1 Introduction

16.2 Multi-source monitoring systems

16.3 The challenges and opportunities of big data for public health

16.4 Epidemiology and big data

16.5 Multiple and heterogeneous data sources

16.6 The contribution of big data and e-health to prevention, monitoring and health vigilance

16.7 The heterogeneity of data, a feature of big data, underlines the importance of interoperability standards

16.8 Conclusion

17: Integrating Bioinformatics Data

Abstract

17.1 Introduction

17.2 The importance of integrating databases in bioinformatics

17.3 Ontologies and gene annotation

17.4 The Gene Ontology (GO) consortium

17.5 Conclusion

18: Clinical Research Data

Abstract

18.1 Introduction

18.2 The clinical research (CR) situation

18.3 The worlds of care activity data and clinical research data are different

18.4 The tools and methods that contribute to a synergetic approach

18.5 Information system initiatives and tools in clinical research

18.6 Conclusion

19: Evaluating Information Systems

Abstract

19.1 Introduction

19.2 Pre-implementation evaluation of an information system

19.3 Evaluation of post-implementation information systems

19.4 Asset value and use value of information systems

19.5 Case studies

19.6 Some lessons

20: The Governance of Healthcare Information Systems, the Hospital, Outpatient and Industrial Contexts

Abstract

20.1 Introduction

20.2 Meaningful use, a tool of governance in the USA

20.3 Emerging governance of healthcare information systems in France

20.4 A rapid change in hospital and outpatient information systems, as well as their governance, is needed

20.5 An extra-hospital offer overly focused on professions with little integration of regional organization

20.6 Industrial offer

20.7 Discussion

Appendix 1: Management of Selected International Terminologies

Other terminologies used in France

Appendix 2: Further Information on DICOM Standards

Appendix 3: Further Information on the système national des données de santé (National Healthcare Data System – SNDS) in France

Appendix 4: Metadata

Definition, presentation

A simple example showing the use of metadata

Appendix 5: Clinical Observation Specifications

Clinical data acquisition standards harmonization (CDASH)

Next-generation platforms

Appendix 6: Ontologies

Definition

Why ontologies?

How do ontologies work?

Appendix 7: Document Banks – Medication Data

The different types of document databases

Some examples of medication data banks

The functions and integration of these bases in information systems

Appendix 8: Hosting Health Data in France

Appendix 9: Developing an Information System Master Plan

Information system master plans

Methodology for developing an information system master plan

Bibliography

Index

Dedication

For Louise

I wish to sincerely thank Patrice Degoulet for his thorough proofreading and significant propositions.

Copyright

First published 2018 in Great Britain and the United States by ISTE Press Ltd and Elsevier Ltd

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Notices

Knowledge and best practice in this field are constantly changing. As new research and experience broaden our understanding, changes in research methods, professional practices, or medical treatment may become necessary.

Practitioners and researchers must always rely on their own experience and knowledge in evaluating and using any information, methods, compounds, or experiments described herein. In using such information or methods they should be mindful of their own safety and the safety of others, including parties for whom they have a professional responsibility.

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The rights of Marius Fieschi to be identified as the author of this work have been asserted by him in accordance with the Copyright, Designs and Patents Act 1988.

British Library Cataloguing-in-Publication Data

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Library of Congress Cataloging in Publication Data

A catalog record for this book is available from the Library of Congress

ISBN 978-1-78548-287-8

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Preface

Marius Fieschi April 2018

We build too many walls and not enough bridges

Isaac Newton

This book is written for all those working as or training to be healthcare professionals and, in particular, for the current and future decision-makers in the area of health information systems. It aims to promote understanding of key factors in health information systems and the general principles of information processing.

But why do we need a systemic approach? Because we must endeavor to highlight the complexity of information systems. The word complexity here refers to complex thought as defined by Edgar Morin [MOR 95]. It must be understood in an etymological sense: something that is woven together. We have learned very well how to separate. It would be better to learn how to put back together [MOR 95]. It is therefore necessary to have a systemic analysis based on a comprehensive, rather than sectoral, approach to the systems studied. This approach focuses on the interactions between the constituent parts. It is constructed in opposition to an overly Cartesian, more reductionist approach that divides the whole into independent parts, thereby limiting overall understanding of reality and giving rise to computer systems that are not interoperable.

Such a firm stance leads to a number of redundancies in presenting issues, data and tools. This seems to be the price to be paid to avoid the kind of isolated analyses that have dominated the design of information systems for too long.

The evolution of the performance of health systems and the strategies implemented to allow them to develop largely concern the continuous improvement of the quality of care, the means to be used to ensure and improve the continuity of health care and the handling of risks. Among decision-makers and healthcare professionals, it is nowadays accepted that the progress expected cannot be achieved xvi Health Data Processing without specialized management and better use of information and communication technology (ICT) integrated within consistent health information systems designed to allow the best reuse of data resources.

The approach cannot be separated from improving the continuity of care, a key part of reliable and controlled processes. The communication between medical teams and care staff within the treatment process is an essential function. It must incorporate the use of tools for managing the processes (workflow) and the sharing of data, with a vital prerequisite being the semantic interoperability of the information subsystems.

The improvement of practices is dependent on the implementation of knowledge established through research. Aside from the functions of traditional communication, information systems must incorporate tools that assist decision-making processes. Enabling the secure use of guidelines for good clinical practices, implementing computerized protocols, and establishing warning systems based on integrated patient files are among the functions expected of these systems.

Informing and empowering patients play a major role in the outcome of healthcare interventions (treatments, preventive campaigns, behaviors, etc.). The patient should be helped to play an active role in order to ensure support for his or her health. In order to do this, interactions between patients and healthcare professionals should be improved, as well as records produced, tools used to assist in decision-making, documentation and educational programs, and, more generally, health teleservices. IT systems should be developed with a view to ensure the interoperability or coupling of data and knowledge. From this perspective, the use of terminology that is appropriate, coherent, consistent and comprehensible to patients is essential.

The progressive establishment of robust systems for sharing health information is technically possible. It requires the political will to organize the healthcare system, professional practices, relations between different actors and the role of patients. One can understand that the difficulties of such a project can only lead to an analysis in favor of solutions that are not only centered on patient interests, but also open, adaptable and upgradeable. Their progressive implementation should be understood by the biggest possible number of actors that require assistance in their projects.

Interoperability aims to make communication understandable. This must be irrespective of the channels used. It concerns the capacity to collaborate using different techniques, organizations and systems [FIE 03]. It also indicates the capacity of independent heterogeneous systems to collaborate with each other harmoniously in order to exchange information or make it freely available to users without requiring specific adaptations to systems or developments. In general, respect for norms and shared standards is necessary. The application of this rule should be monitored carefully as it can restrict innovation. The analysis cannot be reduced to a single solution for technical difficulties.

The conceptual approach to information systems cannot be based on a purely intuitive approach. It requires a systemic modeling vision that can give rise to complex models capable of handling a complex reality. The behavior of actors and the modalities of evaluating practices are complementary components in the implementation of information systems.

In all countries, the principle of sharing patient data is needed, partly owing to the development of medical knowledge that contributes to segmenting the know-how of practical knowledge, the skills and the roles of actors. The application of this principle enables an increased coordination between professionals and requires adaptable and upgradeable information systems. They are the prerequisite for coordinating care, defragmentation and decompartmentalization in the health system. Their management is therefore the responsibility of the State. In France, an additional difficulty has been added to this situation. This concerns the fact that piloting health information systems falls between the responsibilities of the State and those of medical insurance. Arbitrations are difficult but necessary and a clarification would be welcome. Citizens are told of the difficulties of financing medical insurance, reimbursing medical costs, the need to rationalize the organization of the healthcare system to reduce unnecessary costs and so on. It will become increasingly difficult to accept that resources will be allocated to redundant and compartmentalized services not working in sync, causing errors and waste when they are not causing further inequalities. Such organization has no demonstrable benefit to the community.

We should refer here to a dimension that has only recently been recognized. It concerns the reuse of data for purposes other than those for which they were collected. The data collected for care must be available to enhance knowledge, to monitor healthcare and to study the development of health by considering data on the environment, social factors, and so on. Besides the questions on protecting individual freedoms that these data render ever more pressing, the explosion of huge quantities of genetic data, in particular, and, more generally, of heterogeneous Big Data pose their own problems, as well as hark back to the aforementioned problems of interoperability and data integration. The difficulty is rather greater as it concerns organizing the sharing of information between entities whose roles, functions and processes do not fall fully within the scope of an organizational logic that intends for them to report collectively [BRÉ 08].

Information systems management should be understood on several levels: political, organizational, semantic and technical. The development of tools enabling support of the care process, communication between healthcare professionals and the empowerment and support of patients are central to the organization of healthcare systems. Interoperability, an essential element of these information systems, requires responses from each of these levels. It requires a strategy for the choices of reference materials used, responsive organization to ensure their maintenance and reliable usage adapted to the new architectures of information systems. These actions are an inherent part of monitoring technology and supporting research teams in this area.

The actions proposed require professionals to be trained and informed in order to become familiar with the tools, methods and languages that were unknown in their field mere decades ago, but which have invaded to the point of creating new ways of using them [COI 99] and making a key contribution to the overall management of patients. At present, this dimension is significantly lacking as regards the initial training of healthcare professionals. This should be the subject of debate among leading bodies in higher education and of an action plan to promote understanding and use of this culture by future healthcare professionals.

Introduction

Ask a question and you will be stupid for a moment. Don’t ask a question and you will be stupid for a lifetime

Chinese proverb

Information processing should not be discussed as a solely technical problem for computer scientists. Computing tools are a component of implementing information systems, but only a part and not a complete solution, which requires organizations to be analyzed in their entirety. Technical aspects are important but they must be considered in due course, after having clarified the field, the coverage sought in the information system and the organizational and methodological aspects of implementation.

Memorization of information intended for a single category of actors or a single specialty is of little added value

The digital processing of information has historically developed as a means of carrying out certain repetitive tasks more quickly and easily. These have been considered in themselves, independent of other tasks carried out by professionals, in a manner not dissimilar to that of a calculator on an accountant’s desk that allows the simplest arithmetical problems to be resolved quickly and with a low risk of error. Since the automation of specific tasks, software has been able to be developed that can carry out a chain of several tasks in order to fulfill more complicated functions. The information was captured and memorized in order to enable the program to carry out its expected operations. The memorization occurred for this program alone and had no other usage. The outcome of this process was expected and requested by a professional or a small number of individuals sharing the same activities. This process was considered separately to all others in the chain of coordinated actions to be carried out.

This historical perspective allows us to understand that the memorization of a piece of information for a single category of actor and a single narrow sector of activity has a non-optimal added value. The information must be shared between the actors who need to use it and have the right to access it. It must be able to be reused by actors in one or several sectors of related activity (e.g. all actors involved in treating and providing care for a patient).

There are numerous examples of information subsystems resulting from a fragmented approach: the computerization of nursing files in the 1980s, and of cancer files in the 2000s; the emergency management applications following the 2003 heatwave in France as well as, more generally, all of the so-called specialist applications. More recently, there have been a large number of management applications for connected objects (scales, blood pressure-measuring devices, smart watches) independent of management applications for files from hospitals or doctors’ surgeries. All of these types of applications can often be regrouped as vertical applications or in silo formation in relation to the number of more horizontal applications concerning different sectors of activity and requiring numerous categories of actors to participate in complex patient-monitoring processes.

The complexity of human activity cannot find satisfactory answers in siloed systems

The need to use information technology to coordinate activity has been observed in ever-larger organizations that must improve their productivity. More integrated software has been developed as a result. They are able to carry out a series of tasks involving multiple actors within a process known as the business process. In doing so, the complexity of software increases, as their interrelations have been researched and systems begin to take shape. They require appropriate methods and specific skills that go beyond the knowledge of computer technicians.

Computerization can no longer be reduced to a mere automation of tasks. It affects the very organization of professional work and the way in which tasks are carried out, connected and controlled. It also has an impact on the way in which information is shared between actors irrespective of their nature, that is, be they human actors or computer programs. It questions the relationships between individuals and hierarchies. It makes it necessary to have a comprehensive vision with solutions acceptable at all levels.

The costs of developing these integrated computing tools are significant and their maintenance is expensive. At the same time, the development of different pieces of software and their functionalities must be carried out within a limited timeframe. Any delay in achieving a development required by regulations, the reorganization of an activity or the introduction of an innovation equates to a loss in productivity, reduced quality of service or difficulties for those trying to do their jobs in an ill-suited environment. However, information systems in hospitals or groups of hospitals have been created gradually over (too) long periods of time. This has led to access to tools using these methods, development techniques and several generations of technology. The consistency and quality of information suffered despite significant costs for using and maintaining it. As a result, data, for instance, often remain spread around a number of different applications, making the consistency difficult to gauge and control.

Numerous hospitals still have mediocre information systems. It is very difficult for these to match up to the expectations of patients and the best possible standards of care that they aspire to reach. Moreover, from a territorial perspective on their objectives, the agreements established with partner establishments cannot be implemented within the specified timeframes or for acceptable costs. There are simply too many barriers preventing the establishment of high-performance information systems.

Confronting the heterogeneity of data and systems

Heterogeneity characterizes health systems and subsystems: heterogeneity of data, heterogeneity of processes and heterogeneity of applications. The data are heterogeneous because they often invoke different semantic reference terminologies and are presented in incompatible syntactical formats. As with structures, healthcare professionals have specific operating modes. Such heterogeneity among the processes followed makes collaborative work difficult.

The applications resulting from a fragmentary analysis are not designed to work together and contribute to collaborative tasks. Heterogeneity has been observed among applications in systems where there are proprietary applications, software packages using different technologies or software packages of different generations, among other things. They correspond to what analysts group together as taking a bottom-up approach: in a given situation, an application is made that results in what amounts to a computing Tower of Babel, with hundreds of applications unable to communicate with one another.

The reverse top-down approach is part of an overall analysis that will be discussed later. But, in general, the complexity of analysis increases exponentially in line with the extent of the field analyzed.

Operational pathways must be found to resolve the analyst’s information system dilemma: thinking too grandly with the risk of never succeeding against thinking too narrowly with a high likelihood of success but a considerable risk of lack of interoperability in the medium to long term.

As heterogeneity is a feature that information systems must contend with from their design throughout their development, it should be required, in all cases and with reference to the appropriate methodological choices, to foresee it and reduce the disadvantages, or even blockages, that it can cause most often. For example, the choice of international semantic reference material (diagnoses, medications, etc.) reduces the descriptive heterogeneity of the concepts used.

Figure I.1 shows the challenges that must be addressed when analyzing health information systems in order to expand services relating to interconnected care and research.

Figure I.1 Challenges of information processing

Reusing data is necessary and provides high added value

The idea of sharing data and reusing them for purposes that may have been unforeseen beforehand now seems to be necessary and have high added value. We can refer vaguely to data reuse in healthcare or even to secondary use of data. This issue had already emerged in specialized reports developed in the early 1970s. It has been restricted in France, to a certain extent, by the 1978 law on computing and freedom, which requires data to be used for a single purpose only, which must be submitted to the commission nationale de l’informatique et des libertés (National Data Protection Commission – CNIL). This was followed by legislation generally prohibiting the linking and reuse of data. The recent development of needs, the processing methods and societal demand are no longer satisfied by this situation, which must be reexamined.

Besides the clinical data handled by the systems for managing medical records, there are information systems, often at a national level, that deal with socio-medical, economic and environmental data and address the entire population. These data touch on a number of areas enabling different sectors of public healthcare to be managed or analyzed. In France, there are, for example, data on care take-up and costs under medical insurance, managed by the système national d’information inter-régimes de l’assurance maladie (National Inter-plan Health Insurance Information System – SNIIRAM) or even the information system of the Caisse nationale d’assurance vieillesse (National Old Age Pension Fund – CNAV), which can map the different periods of professional activity (employment, unemployment, illness, etc.) of each person in the general social security system. These information systems have been implemented and managed by different public bodies. The reuse of these data for research or monitoring would be extremely useful but must contend with multiple legal, regulatory and organizational difficulties. It also presents challenges relating to the integration of qualified technical data, although these are most often difficulties relating to interoperability and semantics.

Design and implementation of flexible information systems

Changes to the requirements of information processing have led system designers to adopt the following principle: the information system created at time t is destined to become an information subsystem in a larger information system at time t + n. A project will inevitably change and is destined to become part of a bigger system. The target is movable. Consequently, while the computerization of care facilities and technical platforms, for example, was a major topic in the 1970s and the 1980s, that of hospital information systems was central to the thinking of the 1990s. The present expansion of the field of healthcare requires a more comprehensive vision of information systems. This is an example of the territorial expansion of the target and can also have an impact on other aspects. The expansion can therefore affect additional actors, different fields (medical files, patient files, healthcare files) and other issues, for example, the expansion of care to the socio-medical sector, to home monitoring and so on.

At the technical level, the appearance of semantic and syntactic standards (such as XML "eXtended Markup Language and the development of EAI Enterprise Application Integration") has contributed to the expansion of information systems. They alone cannot provide solutions to issues relating to the flexibility of information systems, openness, interoperability and collaborative work. The response to these challenges must be researched within the methods for designing and developing information systems, on the one hand, and training staff and improving the culture of information processing and project management, on the other.

Modeling as a way of responding to issues of flexibility

A model is an abstraction, a schematic representation of an object or a process. It allows reality to be replaced with a simpler form that can correspond to prototypical situations (templates).

The tenets of constructing a model are influential, and the explicit or implicit hypotheses that govern the definition of a model determine the limits of its validity and the reasoning it can justify.

As shown in Figure I.2, modeling