Me On Decisi D icine supp aBSTRACT The task of ensuring Patient Safety is, more than Parsimony. A well-known protocol used in Healt- O ever, central in Healthcare. The report “To Err is hcare and implemented in most (knowledge ba- n s On DecisiOn suppOrt in participatOry upp Human” [Kohn et al. 2000], was revealing alar- sed) CDSS. This rule of thumb is the foundation O ming numbers of incidents, injuries and deaths for the well-known adage: “when you hear hoof Healt rting MeDicine suppOrting HealtH care O caused by deficiencies in healthcare activities. The beats, think horses, not zebras”. Hickam´s Dictum in rt book initiated assessment and change of Healthca- is one well known objection to the simplifications eMpOwerMent re methods and procedures. In addition, numerous of Occam´s Razor stating ”Patients can have as p reports to Swedish HSAN (Medical Responsibility many diseases as they damn well please”. Of cour- articipat Board) have shown a high rate of information and se, this Dictum is harder to implement effectively! H communication deficiencies in Healthcare has a In the thesis we suggest a visualization tool Visual c direct or indirect cause of incidents, injuries and Incidence Anamneses (VIA) to provide middle out are deaths. Despite numerous of new sophisticated compromise between Ockham and Hickam but O eM tools for information management in recent years, providing means to increase Patient Safety. ry p e.g., tools such as Electronic Health Records O Kerstin Ådahl wer (EHR) and Clinical Decision Support Systems The findings of our Study for the thesis have resul- (CDSS), the threats to Patient Safety have not been ted in a number of Aspects and Principles as well M redeemed. Rather to the contrary. Underlying re- as Core-principles for future CDSS design, That ent asons for this paradox are twofold. Firstly, advan- is, tools and methodologies that will support de- cements in diagnosing techniques have given rise signing and validating Interoperability of Health- to increasing volumes of data at the same time as care systems across patient-centric workflows. The the number of patients has increased due to demo- VIA tool should be used as the initiating point in graphic changes and advancements in treatments. a patient (individual) centered workflow, quickly Secondly, the information processing systems are visualizing vital information such as symptoms, far from aligned to related workflow processes. In incidents and diagnoses, occurring earlier in the short, we do not at present have interoperability in medical history, at different times, to ground our Healthcare systems. further vital decisions on. The visualization will enable analysis of timelines and earlier diagnoses In this doctoral dissertation, we present an in-depth of the patient, using visually salient nodes for vi- analysis of two different “HSAN-typical” cases, sualization of causalities in context. Furthermore, where Patient Safety was jeopardized by incom- support for customization of the tool to the views plete information flows and/or information break- of stakeholders, members of healthcare teams and downs. The cases are mirroring the apprehension empowerments of the patient, is crucial. of Simplicity, that is, Occam´s Razor of Diagnostic Kerstin Ådahl Kerstin Blekinge Institute of Technology Doctoral Dissertation Series No. 2012:01 2012:01 ISSN 1653-2090 School of Computing 2012:01 ISBN: 978-91-7295-221-8 On Decision Support in Participatory Medicine Supporting Health Care Empowerment Kerstin Ådahl Blekinge Institute of Technology doctoral dissertation series No 2012:01 On Decision Support in Participatory Medicine Supporting Health Care Empowerment Kerstin Ådahl Doctoral Dissertation in Applied Health Technology School of Computing Blekinge Institute of Technology SWEDEN 2012 Kerstin Ådahl School of Computing Publisher: Blekinge Institute of Technology, SE-371 79 Karlskrona, Sweden Printed by Printfabriken, Karlskrona, Sweden 2011 ISBN: 978-91-7295-221-8 ISSN 1653-2090 urn:nbn:se:bth-00515 Blekinge Institute of Technology Doctoral Dissertation Series No 2012:01 On Decision Support in Participatory Medicine Supporting Health Care Empowerment © 2012 Kerstin Ådahl School of Computing (COM) Blekinge Institute of Technology 2 Abstract The task of ensuring Patient Safety is, more than ever, central in Healthcare. The report “To Err is Human” [Kohn et al. 2000], was revealing alarming numbers of incidents, injuries and deaths caused by deficiencies in healthcare activities. The book initiated assessment and change of Healthcare methods and procedures. In addition, numerous reports to Swedish HSAN (Medical Responsibility Board) have shown a high rate of information and communication deficiencies in Healthcare has a direct or indirect cause of incidents, injuries and deaths. Despite numerous of new sophisticated tools for information management in recent years, e.g., tools such as Electronic Health Records (EHR) and Clinical Decision Support Systems (CDSS), the threats to Patient Safety have not been redeemed. Rather to the contrary. Underlying reasons for this paradox are twofold. Firstly, advancements in diagnosing techniques have given rise to increasing volumes of data at the same time as the number of patients has increased due to demographic changes and advancements in treatments. Secondly, the information processing systems are far from aligned to related workflow processes. In short, we do not at present have interoperability in our Healthcare systems. In this doctoral dissertation, we present an in-depth analysis of two different “HSAN- typical” cases, where Patient Safety was jeopardized by incomplete information flows and/or information breakdowns. The cases are mirroring the apprehension of Simplicity, that is, Occam´s Razor of Diagnostic Parsimony. A well-known protocol used in Healthcare and implemented in most (knowledge based) CDSS. This rule of thumb is the foundation for the well-known adage: “when you hear hoof beats, think horses, not zebras”. Hickam´s Dictum is one well known objection to the simplifications of Occam´s Razor stating "Patients can have as many diseases as they damn well please". Of course, this Dictum is harder to implement effectively! In the thesis we suggest a visualization tool Visual Incidence Anamneses (VIA) to provide middle out compromise between Ockham and Hickam but providing means to increase Patient Safety. The findings of our Study for the thesis have resulted in a number of Aspects and Principles as well as Core-principles for future CDSS design. That is, tools and methodologies that will support designing and validating Interoperability of Healthcare systems across patient-centric workflows. The VIA tool should be used as the initiating point in a patient (individual) centered workflow, quickly visualizing vital information such as symptoms, incidents and diagnoses, occurring earlier in the medical history, at different times, to ground further vital decisions on. The visualization will enable analysis of timelines and earlier diagnoses of the patient, using visually salient nodes for visualization of causalities in context. Furthermore, support for customization of the tool to the views of stakeholders, members of healthcare teams and empowerments of the patient, is crucial. 3 4 ”Att läkekonsten har till fullo dokumenterade sjukdomsförlopp att tacka för sin utveckling är så visst, att tvivel därom icke kan råda.” ”Till nytta kan de vara endast när dokumentationen är fullständig; halvdana, ofullständiga och i avsaknad av nödvändiga omständigheter gör beskrivningarna mera skada än nytta.” Nils Rosén von Rosenstein 1730 [Rosén von Rosenstein 1730] “Without doubt, Medicine owes its development to the existence of thoroughly documented courses of disease.” "They are only useful when the documentation is complete; when mediocre, incomplete and lacking essential context they do more harm than good." 5 6 ”AAtt anföra dessa kriterier är skälet till denna skrift. Försåvitt en läkare vill nedteckna en i varje avseende fullständig sjukdomshistoria, får han inte utelämna någon omständighet som kan vara av betydelse; alltså må han anteckna.” Nils Rosén von Rosenstein 1730 [Rosén von Rosenstein 1730] “To state these criteria is the reason for this publication. Provided that a doctor intends to note down a, in every respect, complete medical history (anamnesis), he may not exclude any circumstance that could be of importance; therefore he must note down." 7 8 “Computers are incredibly fast, accurate and stupid. Human beings are incredibly slow, inaccurate and brilliant. Together they are powerful beyond imagination.” Unknown 9 10 Table of Contents ABSTRACT ............................................................................................................................................... 3 TABLE OF CONTENTS ........................................................................................................................ 11 TABLE OF FIGURES ............................................................................................................................ 13 ACKNOWLEDGEMENTS .................................................................................................................... 15 FOREWORD ........................................................................................................................................... 19 CHAPTER 1 – BACKGROUND ........................................................................................................... 25 1. INTRODUCTION