On Decision Support in Participatory Medicine Supporting Health Care Empowerment

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

On Decision Support in Participatory Medicine Supporting Health Care Empowerment

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

Transparency of Critical Information for Patient Empowerment in eHealth

Today Patient Empowerment is gaining ground in the area of health care in modern western societies. This concept is revolutionary, as it potentially alters the balance of power within traditional and apparently solid hierarchical health care structures. The Internet has accelerated the process by providing tools and techniques enabling nearly unlimited access to information and exchange of experiences. However, the benefit from this approach is bilateral, with respect to both care providers and care receivers (consumers). In order to obtain increased efficiency, in an economical as well as medical perspective, the responsibility for proper health and recovery support lies on both sides. Therefore, patients must be prepared for some kind of action. Accordingly, in the role of being a patient, today and in the future, the patient will no longer be “patient”. On the contrary, the patient must be proactive; not stagnate as a passive receiver of care. Nevertheless, as encouraging as this conceptualization is, it also harbours new demands on this “new type of patient”. Consequently, even if the advantages are predominant, the approach will cause friction: not every patient is capable to take action, as the “new empowered patient” should already be healthy and strong to undertake such tasks (a paradox within the concept). The challenges are, by design of Empowering Systems, to decrease or eliminate such difficulties. For a proper understanding of this licentiate thesis, it is essential to notice that the Patient Empowerment phenomenon is highly related to aspects of activity and learning. With reference to this, these empowering requirements should be met by eHealth design especially adapted for this aim. A Model (the KIViC-model) is advocated, which initially has been constructed, and further on evaluated in a Study within the area of congenital heart conditions, to underpin and strengthen design discussions about the importance of information transparency (for patient activity and learning) in health care. Simultaneously, questions concerning visualization of the right information (what is needed), at the right time (when it is needed), and at the right place (where and how it is needed) are highlighted by virtue of the study. Moreover, and maybe of highest importance, questions of the digital divide and security are discussed to underline hazards related to the transformation of one system into another. The paradox within the Patient Empowerment concept is obviously crucial and most likely is context aware Information Systems Design one key that could resolve this. Conclusively, Empowerment Systems should provide the patient with tools to become empowered; despite impeding deficiencies

Validation of Transparency in e-Health - Turning Information Visible Through Design

Abstract. This paper presents a proposal, a Model, Knowledgeable Intersection of Virtual Communities (KIViC), for the development of (online) Health Information Systems, grounded in the concept of Patient Empowerment (PE). In this proposal, Transparency in design is a crucial point to evaluate. In this special meaning, transparency is about turning information visible by means of design. The model, and an imaginary implementation in the shape of a “mock-up”, is used in a study, performed 2006, to evaluate the usability of an empowering information system for health care. From the study, it is possible to conclude that there exists a tendency is towards a desire for openness and visibility of information and information flow in health care. Advantages and disadvantages with the (e-health and transparency) approach are finally discussed