scholarly journals A systematic approach to the disclosure of genomic findings in clinical practice and research: a proposed framework with colored matrix and decision-making pathways

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Kenji Matsui ◽  
Keiichiro Yamamoto ◽  
Shimon Tashiro ◽  
Tomohide Ibuki
Keyword(s):  
Decision Making ◽  
Clinical Practice ◽  
Systematic Approach ◽  
Genomic Medicine ◽  
Research Subjects ◽  
The Past ◽  
Key Concepts ◽  
Medical Importance ◽  
Comprehensive Framework ◽  
Disclosure Practice

Abstract Background Whether and how to disclose genomic findings obtained in the course of genomic clinical practice and medical research has been a controversial global bioethical issue over the past two decades. Although several recommendations and judgment tools for the disclosure of genomic findings have been proposed, none are sufficiently systematic or inclusive or even consistent with each other. In order to approach the disclosure/non-disclosure practice in an ethical manner, optimal and easy-to-use tools for supporting the judgment of physicians/researchers in genomic medicine are necessary. Methods The bioethics literature on this topic was analyzed to parse and deconstruct the somewhat overlapping and therefore ill-defined key concepts of genomic findings, such as incidental, primary, secondary, and other findings. Based on the deconstruction and conceptual analyses of these findings, we then defined key parameters from which to identify the strength of duty to disclose (SDD) for a genomic finding. These analyses were then applied to develop a framework with the SDD matrix and systematic decision-making pathways for the disclosure of genomic findings. Results The following six major parameters (axes), along with sub-axes, were identified: Axis 1 (settings and institutions where findings emerge); Axis 2 (presence or absence of intention and anticipatability in discovery); Axis 3 (maximal actionability at the time of discovery); Axis 4 (net medical importance); Axis 5 (expertise of treating physician/researcher); and Axis 6 (preferences of individual patients/research subjects for disclosure). For Axes 1 to 4, a colored SDD matrix for genomic findings was developed in which levels of obligation for disclosing a finding can be categorized. For Axes 5 and 6, systematic decision-making pathways were developed via the SDD matrix. Conclusion We analyzed the SDD of genomic findings and developed subsequent systematic decision-making pathways of whether and how to disclose genomic findings to patients/research subjects and their relatives in an ethical manner. Our comprehensive framework may help physicians and researchers in genomic medicine make consistent ethical judgments regarding the disclosure of genomic findings.

scholarly journals Adoption of the concept of person-centred care into discourse in Europe: a systematic literature review

2021 ◽  
Vol 35 (9) ◽  
pp. 265-280 ◽  
Author(s):  
Kristina Rosengren ◽  
Petra Brannefors ◽  
Eric Carlstrom
Keyword(s):  
Decision Making ◽  
Clinical Practice ◽  
Literature Review ◽  
Systematic Approach ◽  
Grey Literature ◽  
Quality Of Healthcare ◽  
Healthcare Systems ◽  
Evidence Based ◽  
Content Type ◽  
Healthcare Settings

PurposeThis study aims to describe how person-centred care, as a concept, has been adopted into discourse in 23 European countries in relation to their healthcare systems (Beveridge, Bismarck, out of pocket).Design/methodology/approachA literature review inspired by the SPICE model, using both scientific studies (CINHAL, Medline, Scopus) and grey literature (Google), was conducted. A total of 1,194 documents from CINHAL (n = 139), Medline (n = 245), Scopus (n = 493) and Google (n = 317) were analysed for content and scope of person-centred care in each country. Countries were grouped based on healthcare systems.FindingsResults from descriptive statistics (percentage, range) revealed that person-centred care was most common in the United Kingdom (n = 481, 40.3%), Sweden (n = 231, 19.3%), the Netherlands (n = 80, 6.7%), Northern Ireland (n = 79, 6.6%) and Norway (n = 61, 5.1%) compared with Poland (0.6%), Hungary (0.5%), Greece (0.4%), Latvia (0.4%) and Serbia (0%). Based on healthcare systems, seven out of ten countries with the Beveridge model used person-centred care backed by scientific literature (n = 999), as opposed to the Bismarck model, which was mostly supported by grey literature (n = 190).Practical implicationsAdoption of the concept of person-centred care into discourse requires a systematic approach at the national (politicians), regional (guidelines) and local (specific healthcare settings) levels visualised by decision-making to establish a well-integrated phenomenon in Europe.Social implicationsEvidence-based knowledge as well as national regulations regarding person-centred care are important tools to motivate the adoption of person-centred care in clinical practice. This could be expressed by decision-making at the macro (law, mission) level, which guides the meso (policies) and micro (routines) levels to adopt the scope and content of person-centred care in clinical practice. However, healthcare systems (Beveridge, Bismarck and out-of-pocket) have different structures and missions owing to ethical approaches. The quality of healthcare supported by evidence-based knowledge enables the establishment of a well-integrated phenomenon in European healthcare.Originality/valueOur findings clarify those countries using the Beveridge healthcare model rank higher on accepting/adopting the concept of person-centered care in discourse. To adopt the concept of person-centred care in discourse requires a systematic approach at all levels in the organisation—from the national (politicians) and regional (guideline) to the local (specific healthcare settings) levels of healthcare.

scholarly journals The Role of Decision Impact Studies in Genomic Medicine in Cancer Care: A Scoping Review and Bibliometric Analysis Protocol

2021 ◽  
Author(s):  
Gillian Parker ◽  
Fiona A Miller
Keyword(s):  
Decision Making ◽  
Clinical Practice ◽  
Bibliometric Analysis ◽  
Scoping Review ◽  
Cancer Care ◽  
Clinical Decision Making ◽  
Genomic Medicine ◽  
Impact Studies ◽  
The Impact

Abstract BackgroundDecision impact studies have become increasingly prevalent in oncology in recent years, particularly in breast cancer prognostic research. Such studies, which aim to evaluate the impact of a test on clinical decision-making, appear to be a new form of knowledge with the potential to impact clinical practice and regulatory decision-making in genomic medicine. Yet their origins, intended purpose and usage have not yet been explored. The objectives of this review are to identify and characterize decision impact studies in genomic medicine in cancer care. This review is comprised of two parts. First, we will conduct a scoping review to catalogue the characteristics of decision impact studies. The scoping review will be followed by a bibliometric analysis to understand the role of actors and institutions in the production and dissemination of this new knowledge, by identifying influential articles, authors, global research trends and collaboration networks. MethodsWe will conduct a scoping review and a bibliometric analysis of the scoping review results. The search will include four databases, Medline, Embase, Scopus and Web of Science, using a comprehensive search strategy developed through a preliminary review of the literature. Arksey & O’Malley’s scoping review methodology, with updates by Levac et al. will be used, and the review will be reported following the PRISMA-ScR checklist. The FT Model will be used to collect and analyze data on clinical utility of decision impact studies. Our bibliometric analysis, using Bibliometrix software, will elucidate the evolution of these studies and provide data on the trends, influences and networks emerging in the field.DiscussionThis review will be a first step in understanding the evolution and uses of these studies and their potential influence on the integration of emerging genomic technologies into clinical practice. By exploring their origin and evolution across space and time, this study will equip future research to investigate the role of these studies in decision-making for regulatory processes, including market access and public and private coverage decision-making. Systematic review registration: Open Science Framework osf.io/hm3jr

Vertebroplasty: A Systematic Approach

2007 ◽  
Vol 2;10 (3;2) ◽  
pp. 367-380
Author(s):  
Mubin I. Syed
Keyword(s):  
Clinical Practice ◽  
Patient Selection ◽  
Systematic Approach ◽  
Spinal Pain ◽  
The United States ◽  
The Past ◽  
Post Procedure ◽  
Methodical Approach ◽  
Hands On ◽  
Difficult Procedure

Background: Though vertebroplasty is a well-known and extremely effective procedure in experienced hands, it is a much more difficult procedure to learn than standard spinal pain injection procedures. We therefore present a simplified, methodical approach to vertebroplasty that can be adopted by trained interventionalists. Many practitioners who attend hands-on cadaver workshops lack confidence to apply this technique in live patients. Objectives: To present a methodical, reproducible, and proven technique. To provide strategies on pre-procedure and post-procedure care in order to optimize outcomes in vertebroplasty patients. Study Design: A step-by-step tutorial is presented outlining the steps in the vertebroplasty procedure. A discussion of anatomic considerations, pre-procedure patient selection issues, and post-procedure management is also presented. Methods: Sections are presented on anatomy, patient selection, a 10-step technique on performance of vertebroplasty, a discussion of how this technique is advantageous, and post-procedure management. Results: This technique has been proven in clinical practice for over 1,500 vertebroplasties and has been well-received the past 4 years by hundreds of trainees taught at numerous hands-on courses (Stryker Interventional Pain, Arthrocare, and Society of Interventional Radiology). Conclusion: A basic tutorial is presented for the beginner who is interested in vertebroplasty. This safe and reproducible technique has been proven in clinical practice. The anatomic considerations, patient selection issues, technique, and post-procedure management has been taught and well received by hundreds of physicians at numerous hands on courses within the United States and Canada. Key words: vertebroplasty, fluoroscopic anatomy, PMMA

scholarly journals Systematic Approach for Development of Knowledge Base in Higher Education

2020 ◽  
Author(s):  
Teba Fadhil Muhsin ◽  
Anjum Zameer Bhat ◽  
Imran Ahmed ◽  
Mohamed Samiulla Khan
Keyword(s):  
Higher Education ◽  
Decision Making ◽  
Big Data ◽  
Middle East ◽  
Teaching And Learning ◽  
Systematic Approach ◽  
Research Work ◽  
Education Sector ◽  
The Past ◽  
The World

Internet of Things and Big Data are revolutionary technologies bringing innovation in almost every sector. These innovative technologies have of late been implemented in the education sector with significant success in achieving the goal of “education par excellence”. A lot of research has been conducted to yield the benefits of IoT in the education sector and many models have been proposed in the past by various researchers all around the world. This research introduces a systematic manner of collecting the data using sensing devices from various cohorts of students studying at “Middle East College” and how this data can be utilized to infer various postulations related to the enhancement of teaching and learning. Moreover, visualization of the facts that may provide preventive and preemptive capabilities to manage and support them in decision making is also explored in great detail. This research work is an effort to contribute to the development of a strong educational system through innovation and inquiry. This research work is also intended to contribute to developing the foundation of “knowledgebase” for Middle East College.

Rational Decision Making in Psychiatry: Evidence-Based Psychiatry is Just the Start

1997 ◽  
Vol 171 (3) ◽  
pp. 226-227 ◽  
Author(s):  
Trevor A. Sheldon ◽  
Simon M. Gilbody
Keyword(s):  
Decision Making ◽  
Clinical Practice ◽  
Systematic Approach ◽  
Research Evidence ◽  
Scientific Basis ◽  
Evidence Based ◽  
Rational Decision ◽  
Rational Decision Making ◽  
Chief Of Staff ◽  
Patterns Of Practice

Geddes and Harrison make the case simply and persuasively for the value of a systematic approach to identifying and applying research evidence in clinical practice. No sensible psychiatrist, nurse or other therapist can justify a situation where patterns of practice are overly influenced by fashion, tradition, what the chief of staff happens to believe, or what the adverts claim, independent of the scientific basis, as represented by the results of valid experimental research.

Truth Matters: Cognitive Integrity as an Intervention for Self-Deception

2017 ◽  
Author(s):  
Eugenia Isabel Gorlin ◽  
Michael W. Otto
Keyword(s):  
Decision Making ◽  
Problem Solving ◽  
Autonomous Agents ◽  
Therapeutic Interventions ◽  
Empirical Validation ◽  
The Past ◽  
Adaptive Problem

To live well in the present, we take direction from the past. Yet, individuals may engage in a variety of behaviors that distort their past and current circumstances, reducing the likelihood of adaptive problem solving and decision making. In this article, we attend to self-deception as one such class of behaviors. Drawing upon research showing both the maladaptive consequences and self-perpetuating nature of self-deception, we propose that self-deception is an understudied risk and maintaining factor for psychopathology, and we introduce a “cognitive-integrity”-based approach that may hold promise for increasing the reach and effectiveness of our existing therapeutic interventions. Pending empirical validation of this theoretically-informed approach, we posit that patients may become more informed and autonomous agents in their own therapeutic growth by becoming more honest with themselves.

Creating autonomous learners in the teaching of English as a second language (ESL) in Zimbabwean secondary schools : a reality or a myth?

2020 ◽  
Vol 1 (3) ◽  
pp. 103-132
Author(s):  
Rungamirai Matiure ◽  
Erick Nyoni
Keyword(s):  
Decision Making ◽  
Second Language ◽  
Multiple Case Study ◽  
Document Analysis ◽  
Learner Autonomy ◽  
Case Study Design ◽  
Midlands Province ◽  
Multiple Case ◽  
Comprehensive Framework

This study explored the utility of the learner autonomy concept in the Zimbabwean O Level English as a Second Language (ESL) classroom focusing on three Gweru urban high schools of the Midlands Province. The researchers intended to establish whether learner autonomy was a reality or just a myth in Zimbabwean classrooms. A qualitative multiple case study design was applied focusing on teaching strategies, availability of resources, challenges faced and ways of optimising it. Questionnaires and document analysis were used for data collection. The findings revealed that the concept did not manifest in explicit terms, the learners did not participate in decision making, and the teachers were not adequately prepared to administer autonomous processes with students. For it to be a reality, the Education Ministry is recommended to establish a comprehensive framework of how autonomous learning should be implemented. Teacher training should explicitly focus on how to develop autonomous learners. Teachers ought to be flexible enough to accommodate learners' contributions towards their learning.

An introduction to advance care planning: practice at the frontline

2018 ◽  
Author(s):  
Anjali Mullick ◽  
Jonathan Martin
Keyword(s):  
Decision Making ◽  
Clinical Practice ◽  
Communication Skills ◽  
Advance Care Planning ◽  
Use Case ◽  
Care Planning ◽  
Practical Advice ◽  
Future Care ◽  
Case Vignettes ◽  
Advance Care

Advance care planning (ACP) is a process of formal decision-making that aims to help patients establish decisions about future care that take effect when they lose capacity. In our experience, guidance for clinicians rarely provides detailed practical advice on how it can be successfully carried out in a clinical setting. This may create a barrier to ACP discussions which might otherwise benefit patients, families and professionals. The focus of this paper is on sharing our experience of ACP as clinicians and offering practical tips on elements of ACP, such as triggers for conversations, communication skills, and highlighting the formal aspects that are potentially involved. We use case vignettes to better illustrate the application of ACP in clinical practice.

Evidence-based Assessment

2010 ◽  
pp. 76-98
Author(s):  
John Hunsley ◽  
Eric J. Mash
Keyword(s):  
Decision Making ◽  
Clinical Assessment ◽  
Assessment Process ◽  
Evidence Based ◽  
The Past ◽  
Specific Assessment ◽  
The Many ◽  
Selection Of ◽  
Made In

Evidence-based assessment relies on research and theory to inform the selection of constructs to be assessed for a specific assessment purpose, the methods and measures to be used in the assessment, and the manner in which the assessment process unfolds. An evidence-based approach to clinical assessment necessitates the recognition that, even when evidence-based instruments are used, the assessment process is a decision-making task in which hypotheses must be iteratively formulated and tested. In this chapter, we review (a) the progress that has been made in developing an evidence-based approach to clinical assessment in the past decade and (b) the many challenges that lie ahead if clinical assessment is to be truly evidence-based.

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