Translating Predictive Models for Alzheimer’s Disease to Clinical Practice: User Research, Adoption Opportunities, and Conceptual Design of a Decision Support Tool

Alzheimer’s Disease (AD) is a common form of Dementia with terrible impact on patients, families, and the healthcare sector. Recent computational advances, such as predictive models, have improved AD data collection and analysis, disclosing the progression pattern of the disease. Whilst clinicians currently rely on a qualitative, experience-led approach to make decisions on patients’ care, the Event-Based Model (EBM) has shown promising results for familial and sporadic AD, making it well positioned to inform clinical decision-making. What proves to be challenging is the translation of computational implementations to clinical applications, due to lack of human factors considerations. The aim of this Ph.D. thesis is to (1) explore barriers and opportunities to the adoption of predictive models for AD in clinical practice; and (2) develop and test the design concept of a tool to enable EBM exploitation by AD clinicians. Following a user-centred design approach, I explored current clinical needs and practices, by means of field observations, interviews, and surveys. I framed the technical-clinical gap, identifying the technical features that were better suited for clinical use, and research-oriented clinicians as the best placed to initially adopt the technology. I designed and tested with clinicians a prototype, icompass, and reviewed it with the technical teams through a series of workshops. This approach fostered a thorough understanding of clinical users’ context and perceptions of the tool’s potential. Furthermore, it provided recommendations to computer scientists pushing forward the models and tool’s development, to enhance user relevance in the future. This thesis is one of the few works addressing a lack of consensus on successful adoption and integration of such innovations to the healthcare environment, from a human factors’ perspective. Future developments should improve prototype fidelity, with interleaved clinical testing, refining design, algorithm, and strategies to facilitate the tool’s integration within clinical practice

Opportunities and barriers for adoption of a decision-support tool for Alzheimer's Disease

Clinical decision-support tools (DSTs) represent a valuable resource in healthcare. However, lack of Human Factors considerations and early design research has often limited their successful adoption. To complement previous technically focused work, we studied adoption opportunities of a future DST built on a predictive model of Alzheimer’s Disease (AD) progression. Our aim is two-fold: exploring adoption opportunities for DSTs in AD clinical care, and testing a novel combination of methods to support this process. We focused on understanding current clinical needs and practices, and the potential for such a tool to be integrated into the setting, prior to its development. Our user-centred approach was based on field observations and semi-structured interviews, analysed through workflow analysis, user profiles, and a design-reality gap model. The first two are common practice, whilst the latter provided added value in highlighting specific adoption needs. We identified the likely early adopters of the tool as being both psychiatrists and neurologists based in research-oriented clinical settings. We defined ten key requirements for the translation and adoption of DSTs for AD around IT, user, and contextual factors. Future works can use and build on these requirements to stand a greater chance to get adopted in the clinical setting

Comparison of Approaches to Management of Large Marine Areas

In order to learn more about the different approaches to managing large-scale marine areas, their comparative merits, and the synergies and overlaps between them, Conservation International (CI) commissioned this independent analysis of several widely applied models. Since 2004, CI, together with a multitude of partners, has been developing the Seascapes model to manage large, multiple-use marine areas in which government authorities, private organizations, and other stakeholders cooperate to conserve the diversity and abundance of marine life and to promote human well-being. The definition of the Seascapes approach and the identification of the essential elements of a functioning Seascape were built from the ground up, informed by the extensive field experience of numerous marine management practitioners. Although the report was commissioned by CI, the views expressed in this report are those of the authors; they were charged with providing a critical examination of all the assessed approaches, including the Seascapes approach. This analysis provides a comprehensive understanding of the strengths and weaknesses of each approach. This will help us -- and, we hope, other readers -- to identify ways to work together to achieve even greater results through synergistic efforts

Concepts of Evidence-Based Practice: Analysis of Evidence-Based Practice and Its Debate

Evidence-based practice (EBP) is a model for clinical decision-making, representing an interdisciplinary approach to clinical practice that aims to optimize clinical decision-making by emphasizing the use of evidence from well-designed research. An evidence-based decision is made by the individual clinician on basis of the best evidence available, in accordance with the patient’s preferences and circumstances. Since 1992, EBP has been a central concept within a growing range of professional fields of health care. At the same time, EBP has been subject to incessant criticism. EBP proponents have responded to criticism, and their responses have then become the object of further criticism. The basic principles of the EBP-model, along with the claims by proponents and opponents for and against these principles, which compose the EBP debate, are the main subjects of this thesis. The thesis has four chapters. In Chapter 1, the principles of Clinical epidemiology are presented as the main scientific framework of EBP. It is through this framework that epidemiologic, outcome-based data is considered the most reliable source of evidence for clinical interventions. In Chapter 2, the constitutive elements of EBP are analyzed, with particular attention to what kind of scientific knowledge (i.e., “research evidence”) and non-scientific knowledge and beliefs (i.e., “clinical expertise” and “patient preferences”) that are inherent in the concept of EBP. In addition, I differentiate between three theoretical concepts of EBP – “narrow”, “moderate”, and “maximal” – which differ relative to the degree to which “clinical expertise” and “patient autonomy” are included in the concept or not. I claim that only “moderate” EBP” is representative for an adequate understanding of the EBP model. Chapter 3 presents an analysis of central claims in the international EBP debate while Chapter 4 attends to central claims in the Norwegian EBP debate. I argue that the most relevant criticism pertains to the confidence in and the application of epidemiologic evidence-sources. This kind of criticism must be distinguished from the claim that EBP represents a narrow scope of evidence. The latter claim is based on a misunderstanding about what “evidence” entails in EBP literature and is representative to a narrow concept of EBP. Yet another kind of criticism, claiming that the EBP model ignores clinical expertise and patient autonomy, is also based on misunderstandings, largely due to lack of clarity in the EBP literature. A general conclusion is that the tendency to imply a narrow interpretation of EBP in much of the criticism, as well as the tendency to conceptual unclarities in much EBP literature, contribute to a less constructive debate. The thesis concludes by suggesting recommendations to both proponents and opponents, which can contribute to a more constructive basis for future EBP debates

Evidence-Based Practice in Clinical Social Work

Evidence-based practice (EBP) is a major shaping influence in clinical social work practice, in relation to economic policies, and in professional education. The definition of EBP remains contested; professionals still fail to distinguish EBP as a practice decision-making process from a list of treatments that have some type of research support (which are correctly called empirically supported treatments). All mental health practitioners should understand what EBP is, what it is not, and how it shapes both client options and their own practice experiences. This book explores EBP in depth and in detail. Our focus includes case exemplars that show how the EBP decision-making process is done in practice. There are many recent books about evidence-based practice in social work and in other mental health professions. In reviewing these books, it appeared to us that most of the books on EBP have been written by researchers, bringing a particular point of view and expertise to the technicalities of EBP. These books are important to social workers and other mental health professionals because EBP involves a lot of technical details about research design, methods, and interpretation that are not always covered in other social work texts. On the other hand, the lack of a more direct practice and clinical viewpoint seemed to leave out a lot of the day-to-day realities clinical social workers confront in learning and using EBP in practice. Recent books also lacked much in the way of a broad and critical perspective on EBP as a social movement shaping policy, agency practice, and views of what constitutes “good” research. As we explored other books as resources for our students and for our own practice, we missed both a larger or meta-perspective on EBP and a lack of attention to doing it in clinical practice. This book seeks to illustrate through several cases how important clinical knowledge and expertise are in doing EBP well. We seek to introduce the core ideas and practice of EBP and then illustrate them by applying the concepts and processes to real-world cases. We also take a critical look at how EBP has been implemented in practice, education, and policy. Eight years after we wrote the first edition of this book, EBP continues to be a major influence on clinical practice. Some areas of the book, particularly the research evidence used in our case examples, needed to be updated and mad

Best practice in undertaking and reporting health technology assessments : Working Group 4 report

[Executive Summary] The aim of Working Group 4 has been to develop and disseminate best practice in undertaking and reporting assessments, and to identify needs for methodologic development. Health technology assessment (HTA) is a multidisciplinary activity that systematically examines the technical performance, safety, clinical efficacy, and effectiveness, cost, costeffectiveness, organizational implications, social consequences, legal, and ethical considerations of the application of a health technology (18). HTA activity has been continuously increasing over the last few years. Numerous HTA agencies and other institutions (termed in this report “HTA doers”) across Europe are producing an important and growing amount of HTA information. The objectives of HTA vary considerably between HTA agencies and other actors, from a strictly political decision making–oriented approach regarding advice on market licensure, coverage in benefits catalogue, or investment planning to information directed to providers or to the public. Although there seems to be broad agreement on the general elements that belong to the HTA process, and although HTA doers in Europe use similar principles (41), this is often difficult to see because of differences in language and terminology. In addition, the reporting of the findings from the assessments differs considerably. This reduces comparability and makes it difficult for those undertaking HTA assessments to integrate previous findings from other HTA doers in a subsequent evaluation of the same technology. Transparent and clear reporting is an important step toward disseminating the findings of a HTA; thus, standards that ensure high quality reporting may contribute to a wider dissemination of results. The EUR-ASSESS methodologic subgroup already proposed a framework for conducting and reporting HTA (18), which served as the basis for the current working group. New developments in the last 5 years necessitate revisiting that framework and providing a solid structure for future updates. Giving due attention to these methodologic developments, this report describes the current “best practice” in both undertaking and reporting HTA and identifies the needs for methodologic development. It concludes with specific recommendations and tools for implementing them, e.g., by providing the structure for English-language scientific summary reports and a checklist to assess the methodologic and reporting quality of HTA reports

Sorting Out Autism Spectrum Disorders: Evidence-Based Medicine and the Complexities of the Clinical Encounter

Clinical decisions regarding the diagnosis and treatment of Autism Spectrum Disorders (ASDs) are commonly based upon heterogeneous evidence and ‘expert opinion’. To date, research examining how paediatricians are using (or not using) evidence-based medicine (EBM) to diagnose and treat patients with an ASD has been absent within the literature across all disciplines. To understand how Australian paediatricians are using EBM to conceptualise, diagnose, and treat patients with an ASD, this study interviewed nine paediatricians in private practice using a face-to-face, semi-structured approach. Participants were asked questions about diagnosis and treatment of ASDs, and general questions about their attitudes towards EBM. Analysis of the interviews revealed four key factors affecting the clinical encounter with the ASD patient: the role of experience in the clinical encounter, the tacit and experiential nature of diagnosing and treating ASDs, skilful and creative interaction between the paediatrician and the diagnostic tools (tool “tinkering”), and the influence of political and social forces. This study contributes to sociological understandings of EBM and how it is used by paediatricians to diagnose and treat ASDs. It also demonstrates that this process involves constant negotiation between clinical experience, the evidence, intersubjective evaluation, and social forces

Sorting Out Autism Spectrum Disorders: Evidence-Based Medicine and the Complexities of the Clinical Encounter

Clinical decisions regarding the diagnosis and treatment of Autism Spectrum Disorders (ASDs) are commonly based upon heterogeneous evidence and ‘expert opinion’. To date, research examining how paediatricians are using (or not using) evidence-based medicine (EBM) to diagnose and treat patients with an ASD has been absent within the literature across all disciplines. To understand how Australian paediatricians are using EBM to conceptualise, diagnose, and treat patients with an ASD, this study interviewed nine paediatricians in private practice using a face-to-face, semi-structured approach. Participants were asked questions about diagnosis and treatment of ASDs, and general questions about their attitudes towards EBM. Analysis of the interviews revealed four key factors affecting the clinical encounter with the ASD patient: the role of experience in the clinical encounter, the tacit and experiential nature of diagnosing and treating ASDs, skilful and creative interaction between the paediatrician and the diagnostic tools (tool “tinkering”), and the influence of political and social forces. This study contributes to sociological understandings of EBM and how it is used by paediatricians to diagnose and treat ASDs. It also demonstrates that this process involves constant negotiation between clinical experience, the evidence, intersubjective evaluation, and social forces

Rational decision-making in medicine: implications for overuse and underuse

open access articleIn spite of substantial spending and resource utilization, today's health care remains characterized by poor outcomes, largely due to overuse (over-testing/treatment) or underuse (under-testing/treatment) of services. To a significant extent, this is a consequence of low-quality decision-making that appears to violate various rationality criteria. Such sub-optimal decision-making is considered a leading cause of death and is responsible for more than 80% of health expenses. In this paper, we address the issue of overuse or underuse of healthcare interventions from the perspective of rational choice theory. We show that what is considered rational under one decision theory may not be considered rational under a different theory. We posit that the questions and concerns regarding both underuse and overuse have to be addressed within a specific theoretical framework. The applicable rationality criterion, and thus the “appropriateness” of health care delivery choices, depends on theory selection that is appropriate to specific clinical situations. We provide a number of illustrations showing how the choice of theoretical framework influences both our policy and individual decision-making. We also highlight the practical implications of our analysis for the current efforts to measure the quality of care and link such measurements to the financing of healthcare services