Health Informatics For Paediatric Ophthalmology

262 Pages·2017·4.15 MB·English

Electronic Medical Records in paediatric ophthalmology:
A study of potential users and uses to inform design

Maria S. Cross

In partial fulfilment for a
Doctor of Philosophy
in Health Informatics

UCL Great Ormond Street Institute of Child Health
University College London

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Declaration
I, Maria Cross confirm that the work presented in this thesis is my own. Where
information has been derived from other sources, I confirm that this has been
indicated in the thesis.

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Abstract
Electronic medical records are at the core of an advancing movement toward
information-driven healthcare. By enhancing abilities to capture, store, and analyse
vast amounts of health data, the routine use of electronic medical records is
advocated as a means to improve the efficiency and quality of care provision,
advance population health, empower patients, and reduce healthcare costs.
However, the delivery of any benefits is threatened by a failure to understand the
unique care environments of different clinical specialties, and to appropriately
customise system design. This has prompted a move to the user-centred design
process of health information technology.
Paediatric ophthalmology is a unique field that faces particular challenges in
electronic medical record adoption. As with other ophthalmic specialties, the heavy
use of imaging and diagrammatic documentation is difficult to replicate
electronically. As is the flexibility required to meet the demands incurred by the
varying ages, developmental stages, and visual needs of each patient, reflecting a
unique interface between the ophthalmic and paediatric requirements.
The consideration of such requirements is essential throughout the user-centred
design of effective health information technology systems. However, paucity in the
evidence base surrounding electronic medical record design methodologies and
system usage hinders technological development and application within paediatric
ophthalmology.
This research was centred on a user-centred design process, to provide an
understanding of the users of electronic medical records in paediatric
ophthalmology, and their requirements. Taking a mixed methods approach, this
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research initially explored the landscape of medical record use – gathering user-
centred requirements – and concluded with the development and testing of three
prototype data collection forms, for specific use cases within paediatric
ophthalmology. Overall, this work articulates the specific challenges and
requirements in this area, and provides the foundation for future design and
adoption strategies of electronic medical record systems within paediatric
ophthalmology.

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Acknowledgements
First and foremost, I would like to thank all of the members of the Great Ormond
Street Hospital department of clinical and academic ophthalmology, who so
generously contributed their time and ideas to the work presented in this thesis.
I am also deeply grateful for the help and support provided by my supervisory team:
Professor Jugnoo Rahi, Mr. Bill Aylward, and Mr. Robert Henderson. Upon
introducing me to the GOSH ophthalmology clinics and kindly inviting me to observe
in theatre for the first time, Rob affirmed, “you never forget your first”; it is truthfully
an honour to be able to return the favour.
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Table of Contents
Declaration ......................................................................................................................... 2
Abstract ............................................................................................................................... 3
Acknowledgements ......................................................................................................... 5
Table of Contents .............................................................................................................. 6
Table of Figures .............................................................................................................. 11
Table of Tables ................................................................................................................ 14
Table of Supplementary Materials ........................................................................... 16
List of abbreviations ..................................................................................................... 17
Chapter 1 Introduction ................................................................................................. 19
1.1 Background .................................................................................................................. 19
1.1.1 Health informatics .......................................................................................................... 19
1.1.2 Health information technology and the National Health Service ............... 21
1.1.3 Learning health systems .............................................................................................. 28
1.1.4 Electronic medical records in ophthalmology .................................................... 32
1.1.5 User-centred design ...................................................................................................... 36
1.1.6 Summary ............................................................................................................................ 38
1.2 Research outline ......................................................................................................... 40
1.2.1 Aims and objectives ....................................................................................................... 40
1.2.2 Research approach and setting ................................................................................. 40
1.2.3 Research ethics ................................................................................................................ 43
Chapter 2 “Use-scape” Exploration .......................................................................... 44
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2.1 Chapter aims................................................................................................................. 44
2.2 Methods .......................................................................................................................... 45
2.2.1 Study design ..................................................................................................................... 45
2.2.2 A national online survey of paediatric ophthalmic clinicians ...................... 45
2.2.3 Literature review ............................................................................................................ 47
2.2.4 Interviews .......................................................................................................................... 48
2.3 Results ............................................................................................................................ 51
2.3.1 Survey participants ........................................................................................................ 51
2.3.2 The current landscape .................................................................................................. 51
2.3.3 The perceived barriers to routine EMR use ........................................................ 56
2.3.4 The perceived benefits of routine EMR use ......................................................... 66
2.3.5 Previous EMR experience ........................................................................................... 68
2.4 Discussion ..................................................................................................................... 70
2.4.1 Study strengths and limitations ............................................................................... 70
2.4.2 EMR adoption in NHS paediatric ophthalmology ............................................. 71
2.4.3 Medical record users and uses .................................................................................. 73
2.4.4 Conclusions ....................................................................................................................... 76
Chapter 3 User analysis ................................................................................................ 77
3.1 Introduction ................................................................................................................. 77
3.1.1 User analysis in UCD ..................................................................................................... 77
3.1.2 Defining the structure and contents of EMRs ..................................................... 79
3.1.3 Chapter aims and objectives ...................................................................................... 83
3.2 Methods .......................................................................................................................... 85
3.2.1 Research design .............................................................................................................. 85
3.2.2 Research setting .............................................................................................................. 85
3.2.3 Time-motion study ........................................................................................................ 86
3.2.4 Artifact analysis – a retrospective medical record review ............................ 91
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3.3 Results ............................................................................................................................ 99
3.3.1 Data overview .................................................................................................................. 99
3.3.2 Clinical consultations ..................................................................................................102
3.3.3 Using medical records to record clinical findings – the maximal set of
routinely collected data .................................................................................................................109
3.3.4 Variations in clinical documentation ....................................................................110
3.4 Discussion ................................................................................................................... 128
3.4.1 Study strengths and limitations..............................................................................128
3.4.2 Medical record design requirements ...................................................................131
3.4.3 Transitioning to electronic working .....................................................................135
3.4.4 Implications for UCD: Next steps ...........................................................................137
Chapter 4 Applying the user-centred approach ............................................... 139
4.1 Introduction ............................................................................................................... 139
4.1.1 UCD techniques .............................................................................................................139
4.1.2 Chapter aims and overview ......................................................................................140
4.2 Development case studies .................................................................................... 141
4.2.1 Case study 1: Retinopathy of prematurity screening ....................................141
4.2.2 Case study 2: Infant visual acuity plots ...............................................................153
4.2.3 Case study 3: Pedigree drawing .............................................................................160
4.3 Conclusions ................................................................................................................ 178
Chapter 5 The suitability of SNOMED-CT ............................................................ 180
5.1 Introduction ............................................................................................................... 180
5.1.1 SNOMED-CT structure ................................................................................................180
5.1.2 SNOMED-CT for ophthalmology .............................................................................182
5.1.3 Study aim .........................................................................................................................183
5.2 Methods ....................................................................................................................... 184
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5.2.1 Study context .................................................................................................................. 184
5.2.2 Expression identification .......................................................................................... 184
5.2.3 Expression coding ........................................................................................................ 185
5.2.4 Data analyses .................................................................................................................. 187
5.3 Results ......................................................................................................................... 188
5.3.1 BCVIS2 clinical expressions ..................................................................................... 188
5.3.2 Expression coding with SNOMED-CT ................................................................... 188
5.4 Discussion .................................................................................................................. 196
5.4.1 Study strengths and limitations ............................................................................. 196
5.4.2 Suitability of SNOMED-CT for paediatric ophthalmology ........................... 196
5.4.3 Electronic coding .......................................................................................................... 198
5.4.4 Research applications of SNOMED-CT ................................................................. 200
5.4.5 Conclusions ..................................................................................................................... 201
Chapter 6 Conclusions and future work.............................................................. 203
6.1 The landscape of EMR use in paediatric ophthalmology .......................... 203
6.2 Comments on the user-centred approach ...................................................... 204
6.3 Disruptive innovation ............................................................................................ 205
6.4 The single-purpose application model ............................................................ 206
Bibliography ................................................................................................................. 210
Appendices .................................................................................................................... 230
Appendix A: National survey question items .............................................................. 231
Appendix B: Flowchart of the Pubmed literature search. ...................................... 240
Appendix C: Interview participant characteristics .................................................. 241
Appendix D: Topic guide for semi-structured interviews...................................... 242
Appendix E: Time-motion study database schema ................................................... 245
Appendix F: Medical record review database schema ............................................ 246
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Appendix G: The cluster membership characteristics for two outlier clusters
produced by an agglomerative hierarchical sequence clustering of medical
record data .............................................................................................................................. 247
Appendix H: Anonymised report of plotted visual acuities ................................... 248
Appendix I: Pedigree drawing scenarios ...................................................................... 249
Appendix J: Standardised pedigree drawing features ............................................. 252
Appendix K: SNOMED CT email questionnaire with cover letter and
background information .................................................................................................... 254

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