Understanding and Characterizing Shared Decision-Making and Behavioral Intent in Medical Uncertainty

Applying Theoretical Constructs to Address Medical Uncertainty Situations involving medical reasoning usually include some level of medical uncertainty. Despite the identification of shared decision-making (SDM) as an effective technique, it has been observed that the likelihood of physicians and patients engaging in shared decision making is lower in those situations where it is most needed; specifically in circumstances of medical uncertainty. Having identified shared decision making as an effective, yet often a neglected approach to resolving a lack of information exchange in situations involving medical uncertainty, the next step is to determine the way(s) in which SDM can be integrated and the supplemental processes that may facilitate its integration. SDM involves unique types of communication and relationships between patients and physicians. Therefore, it is necessary to further understand and incorporate human behavioral elements - in particular, behavioral intent - in order to successfully identify and realize the potential benefits of SDM. This paper discusses the background and potential interaction between the theories of shared decision-making, medical uncertainty, and behavioral intent. Identifying Shared Decision-Making Elements in Medical Encounters Dealing with Uncertainty A recent summary of the state of medical knowledge in the U.S. reported that nearly half (47%) of all treatments were of unknown effectiveness, and an additional 7% involved an uncertain tradeoff between benefits and harms. Shared decision-making (SDM) was identified as an effective technique for managing uncertainty when two or more parties were involved. In order to understand which of the elements of SDM are used most frequently and effectively, it is necessary to identify these key elements, and understand how these elements related to each other and the SDM process. The elements identified through the course of the present research were selected from basic principles of the SDM model and the “Data, Information, Knowledge, Wisdom” (DIKW) Hierarchy. The goal of this ethnographic research was to identify which common elements of shared decision-making patients are most often observed applying in the medical encounter. The results of the present study facilitated the understanding of which elements patients were more likely to exhibit during a primary care medical encounter, as well as determining variables of interest leading to more successful shared decision-making practices between patients and their physicians. Understanding Behavioral Intent to Participate in Shared Decision-Making in Medically Uncertain Situations Objective: This article describes the process undertaken to identify and validate behavioral and normative beliefs and behavioral intent of men between the ages of 45-70 with regard to participating in shared decision-making in medically uncertain situations. This article also discusses the preliminary results of the aforementioned processes and explores potential future uses of this information which may facilitate greater understanding, efficiency and effectiveness of doctor-patient consultations.Design: Qualitative Study using deductive content analysisSetting: Individual semi-structure patient interviews were conducted until data saturation was reached. Researchers read the transcripts and developed a list of codes.Subjects: 25 subjects drawn from the Philadelphia community.Measurements: Qualitative indicators were developed to measure respondents’ experiences and beliefs related to behavioral intent to participate in shared decision-making during medical uncertainty. Subjects were also asked to complete the Krantz Health Opinion Survey as a method of triangulation.Results: Several factors were repeatedly described by respondents as being essential to participate in shared decision-making in medical uncertainty. These factors included past experience with medical uncertainty, an individual’s personality, and the relationship between the patient and his physician.Conclusions: The findings of this study led to the development of a category framework that helped understand an individual’s needs and motivational factors in their intent to participate in shared decision-making. The three main categories include 1) an individual’s representation of medically uncertainty, 2) how the individual copes with medical uncertainty, and 3) the individual’s behavioral intent to seek information and participate in shared decision-making during times of medically uncertain situations.

Handling uncertainty in a medical study of dietary intake during pregnancy

This paper is concerned with handling uncertainty as part of the analysis of data from a medical study. The study is investigating connections between the birth weight of babies and the dietary intake of their mothers. Bayesian belief networks were used in the analysis. Their perceived benefits include (i) an ability to represent the evidence emerging from the evolving study, dealing effectively with the inherent uncertainty involved; (ii) providing a way of representing evidence graphically to facilitate analysis and communication with clinicians; (iii) helping in the exploration of the data to reveal undiscovered knowledge; and (iv) providing a means of developing an expert system application.

Uncertainty budget in the measurement of typical airborne number, surface area and mass particle distributions

The effects of particulate matter on environment and public health have been widely studied in recent years. A number of studies in the medical field have tried to identify the specific effect on human health of particulate exposure, but agreement amongst these studies on the relative importance of the particles’ size and its origin with respect to health effects is still lacking. Nevertheless, air quality standards are moving, as the epidemiological attention, towards greater focus on the smaller particles. Current air quality standards only regulate the mass of particulate matter less than 10 μm in aerodynamic diameter (PM10) and less than 2.5 μm (PM2.5). The most reliable method used in measuring Total Suspended Particles (TSP), PM10, PM2.5 and PM1 is the gravimetric method since it directly measures PM concentration, guaranteeing an effective traceability to international standards. This technique however, neglects the possibility to correlate short term intra-day variations of atmospheric parameters that can influence ambient particle concentration and size distribution (emission strengths of particle sources, temperature, relative humidity, wind direction and speed and mixing height) as well as human activity patterns that may also vary over time periods considerably shorter than 24 hours. A continuous method to measure the number size distribution and total number concentration in the range 0.014 – 20 μm is the tandem system constituted by a Scanning Mobility Particle Sizer (SMPS) and an Aerodynamic Particle Sizer (APS). In this paper, an uncertainty budget model of the measurement of airborne particle number, surface area and mass size distributions is proposed and applied for several typical aerosol size distributions. The estimation of such an uncertainty budget presents several difficulties due to i) the complexity of the measurement chain, ii) the fact that SMPS and APS can properly guarantee the traceability to the International System of Measurements only in terms of number concentration. In fact, the surface area and mass concentration must be estimated on the basis of separately determined average density and particle morphology. Keywords: SMPS-APS tandem system, gravimetric reference method, uncertainty budget, ultrafine particles.

Incorporating parameter uncertainty into quantitative microbial risk assessment (QMRA)

Modern statistical models and computational methods can now incorporate uncertainty of the parameters used in Quantitative Microbial Risk Assessments (QMRA). Many QMRAs use Monte Carlo methods, but work from fixed estimates for means, variances and other parameters. We illustrate the ease of estimating all parameters contemporaneously with the risk assessment, incorporating all the parameter uncertainty arising from the experiments from which these parameters are estimated. A Bayesian approach is adopted, using Markov Chain Monte Carlo Gibbs sampling (MCMC) via the freely available software, WinBUGS. The method and its ease of implementation are illustrated by a case study that involves incorporating three disparate datasets into an MCMC framework. The probabilities of infection when the uncertainty associated with parameter estimation is incorporated into a QMRA are shown to be considerably more variable over various dose ranges than the analogous probabilities obtained when constants from the literature are simply ‘plugged’ in as is done in most QMRAs. Neglecting these sources of uncertainty may lead to erroneous decisions for public health and risk management.

Bayesian mixtures for modelling complex medical data : a case study in Parkinson’s disease

Mixture models are a flexible tool for unsupervised clustering that have found popularity in a vast array of research areas. In studies of medicine, the use of mixtures holds the potential to greatly enhance our understanding of patient responses through the identification of clinically meaningful clusters that, given the complexity of many data sources, may otherwise by intangible. Furthermore, when developed in the Bayesian framework, mixture models provide a natural means for capturing and propagating uncertainty in different aspects of a clustering solution, arguably resulting in richer analyses of the population under study. This thesis aims to investigate the use of Bayesian mixture models in analysing varied and detailed sources of patient information collected in the study of complex disease. The first aim of this thesis is to showcase the flexibility of mixture models in modelling markedly different types of data. In particular, we examine three common variants on the mixture model, namely, finite mixtures, Dirichlet Process mixtures and hidden Markov models. Beyond the development and application of these models to different sources of data, this thesis also focuses on modelling different aspects relating to uncertainty in clustering. Examples of clustering uncertainty considered are uncertainty in a patient’s true cluster membership and accounting for uncertainty in the true number of clusters present. Finally, this thesis aims to address and propose solutions to the task of comparing clustering solutions, whether this be comparing patients or observations assigned to different subgroups or comparing clustering solutions over multiple datasets. To address these aims, we consider a case study in Parkinson’s disease (PD), a complex and commonly diagnosed neurodegenerative disorder. In particular, two commonly collected sources of patient information are considered. The first source of data are on symptoms associated with PD, recorded using the Unified Parkinson’s Disease Rating Scale (UPDRS) and constitutes the first half of this thesis. The second half of this thesis is dedicated to the analysis of microelectrode recordings collected during Deep Brain Stimulation (DBS), a popular palliative treatment for advanced PD. Analysis of this second source of data centers on the problems of unsupervised detection and sorting of action potentials or "spikes" in recordings of multiple cell activity, providing valuable information on real time neural activity in the brain.

Internet usage trends in medical informatics

Technological growth in the 21st century is exponential. Simultaneously, development of the associated risk, uncertainty and user acceptance are scattered. This required appropriate study to establish people accepting controversial technology (PACT). The Internet and services around it, such as World Wide Web, e-mail, instant messaging and social networking are increasingly becoming important in many aspects of our lives. Information related to medical and personal health sharing using the Internet is controversial and demand validity, usability and acceptance. Whilst literature suggest, Internet enhances patients and physicians’ positive interactions some studies establish opposite of such interaction in particular the associated risk. In recent years Internet has attracted considerable attention as a means to improve health and health care delivery. However, it is not clear how widespread the use of Internet for health care really is or what impact it has on health care utilisation. Estimated impact of Internet usage varies widely from the locations locally and globally. As a result, an estimate (or predication) of Internet use and their effects in Medical Informatics related decision-making is impractical. This open up research issues on validating and accepting Internet usage when designing and developing appropriate policy and processes activities for Medical Informatics, Health Informatics and/or e-Health related protocols. Access and/or availability of data on Internet usage for Medical Informatics related activities are unfeasible. This paper presents a trend analysis of the growth of Internet usage in medical informatics related activities. In order to perform the analysis, data was extracted from ERA (Excellence Research in Australia) ranked “A” and “A*” Journal publications and reports from the authenticated public domain. The study is limited to the analyses of Internet usage trends in United States, Italy, France and Japan. Projected trends and their influence to the field of medical informatics is reviewed and discussed. The study clearly indicates a trend of patients becoming active consumers of health information rather than passive recipients.

Error and uncertainty of adult age estimation of the pubic symphysis in an Australian sub-population using computed tomography

After attending this presentation, attendees will gain awareness of: (1) the error and uncertainty associated with the application of the Suchey-Brooks (S-B) method of age estimation of the pubic symphysis to a contemporary Australian population; (2) the implications of sexual dimorphism and bilateral asymmetry of the pubic symphysis through preliminary geometric morphometric assessment; and (3) the value of three-dimensional (3D) autopsy data acquisition for creating forensic anthropological standards. This presentation will impact the forensic science community by demonstrating that, in the absence of demographically sound skeletal collections, post-mortem autopsy data provides an exciting platform for the construction of large contemporary ‘virtual osteological libraries’ for which forensic anthropological research can be conducted on Australian individuals. More specifically, this study assesses the applicability and accuracy of the S-B method to a contemporary adult population in Queensland, Australia, and using a geometric morphometric approach, provides an insight to the age-related degeneration of the pubic symphysis. Despite the prominent use of the Suchey-Brooks (1990) method of age estimation in forensic anthropological practice, it is subject to intrinsic limitations, with reports of differential inter-population error rates between geographical locations1-4. Australian forensic anthropology is constrained by a paucity of population specific standards due to a lack of repositories of documented skeletons. Consequently, in Australian casework proceedings, standards constructed from predominately American reference samples are applied to establish a biological profile. In the global era of terrorism and natural disasters, more specific population standards are required to improve the efficiency of medico-legal death investigation in Queensland. The sample comprises multi-slice computed tomography (MSCT) scans of the pubic symphysis (slice thickness: 0.5mm, overlap: 0.1mm) on 195 individuals of caucasian ethnicity aged 15-70 years. Volume rendering reconstruction of the symphyseal surface was conducted in Amira® (v.4.1) and quantitative analyses in Rapidform® XOS. The sample was divided into ten-year age sub-sets (eg. 15-24) with a final sub-set of 65-70 years. Error with respect to the method’s assigned means were analysed on the basis of bias (directionality of error), inaccuracy (magnitude of error) and percentage correct classification of left and right symphyseal surfaces. Morphometric variables including surface area, circumference, maximum height and width of the symphyseal surface and micro-architectural assessment of cortical and trabecular bone composition were quantified using novel automated engineering software capabilities. The results of this study demonstrated correct age classification utilizing the mean and standard deviations of each phase of the S-B method of 80.02% and 86.18% in Australian males and females, respectively. Application of the S-B method resulted in positive biases and mean inaccuracies of 7.24 (±6.56) years for individuals less than 55 years of age, compared to negative biases and mean inaccuracies of 5.89 (±3.90) years for individuals greater than 55 years of age. Statistically significant differences between chronological and S-B mean age were demonstrated in 83.33% and 50% of the six age subsets in males and females, respectively. Asymmetry of the pubic symphysis was a frequent phenomenon with 53.33% of the Queensland population exhibiting statistically significant (χ2 - p<0.01) differential phase classification of left and right surfaces of the same individual. Directionality was found in bilateral asymmetry, with the right symphyseal faces being slightly older on average and providing more accurate estimates using the S-B method5. Morphometric analysis verified these findings, with the left surface exhibiting significantly greater circumference and surface area than the right (p<0.05). Morphometric analysis demonstrated an increase in maximum height and width of the surface with age, with most significant changes (p<0.05) occurring between the 25-34 and 55-64 year age subsets. These differences may be attributed to hormonal components linked to menopause in females and a reduction in testosterone in males. Micro-architectural analysis demonstrated degradation of cortical composition with age, with differential bone resorption between the medial, ventral and dorsal surfaces of the pubic symphysis. This study recommends that the S-B method be applied with caution in medico-legal death investigations of unknown skeletal remains in Queensland. Age estimation will always be accompanied by error; therefore this study demonstrates the potential for quantitative morphometric modelling of age related changes of the pubic symphysis as a tool for methodological refinement, providing a rigor and robust assessment to remove the subjectivity associated with current pelvic aging methods.

Double standards in special medical research : questioning the discrepancy between requirements for medical research involving incompetent adults and medical research involving children

Medical research represents a substantial departure from conventional medical care. Medical care is patient-orientated, with decisions based on the best interests and/or wishes of the person receiving the care. In contrast, medical research is future-directed. Primarily it aims to contribute new knowledge about illness or disease, or new knowledge about interventions, such as drugs, that impact upon some human condition. Current State and Territory laws and research ethics guidelines in Australia relating to the review of medical research appropriately acknowledge that the functions of medical care and medical research differ. Prior to a medical research project commencing, the study must be reviewed and approved by a Human Research Ethics Committee (HREC). For medical research involving incompetent adults, some jurisdictions require an additional, independent safeguard by way of tribunal or court approval of medical research protocols. This extra review process reflects the uncertainty of medical research involvement, and the difficulties surrogate decision-makers of incompetent adults face in making decisions about others, and deliberating about the risks and benefits of research involvement. Parents of children also face the same difficulties when making decisions about their child’s research involvement. However, unlike the position concerning incompetent adults, there are no similar safeguards under Australian law in relation to the approval of medical research involving children. This column questions why this discrepancy exists with a view to generating further dialogue on the topic.

Good Lives, Hidden Miseries : An Ethnography of Uncertainty in a Finnish Village

This is an ethnographic study, in the field of medical anthropology, of village life among farmers in southwest Finland. It is based on 12 months of field work conducted 2002-2003 in a coastal village. The study discusses how social and cultural change affects the life of farmers, how they experience it and how they act in order to deal with the it. Using social suffering as a methodological approach the study seeks to investigate how change is related to lived experiences, idioms of distress, and narratives. Its aim has been to draw a locally specific picture of what matters are at stake in the local moral world that these farmers inhabit, and how they emerge as creative actors within it. A central assumption made about change is that it is two-fold; both a constructive force which gives birth to something new, and also a process that brings about uncertainty regarding the future. Uncertainty is understood as an existential condition of human life that demands a response, both causing suffering and transforming it. The possibility for positive outcomes in the future enables one to understand this small suffering of everyday life both as a consequence of social change, which fragments and destroys, and as an answer to it - as something that is positively meaningful. Suffering is seen to engage individuals to ensure continuity, in spite of the odds, and to sustain hope regarding the future. When the fieldwork was initiated Finland had been a member of the European Union for seven years and farmers felt it had substantially impacted on their working conditions. They complained about the restrictions placed on their autonomy and that their knowledge was neither recognised, nor respected by the bureaucrats of the EU system. New regulations require them to work in a manner that is morally unacceptable to them and financial insecurity has become more prominent. All these changes indicate the potential loss of the home and of the ability to ensure continuity of the family farm. Although the study initially focused on getting a general picture of working conditions and the nature of farming life, during the course of the fieldwork there was repeated mention of a perceived high prevalence of cancer in the area. This cancer talk is replete with metaphors that reveal cultural meanings tied to the farming life and the core values of autonomy, endurance and permanence. It also forms the basis of a shared identity and a means of delivering a moral message about the fragmentation of the good life; the loss of control; and the invasion of the foreign. This thesis formed part of the research project Expressions of Suffering. Ethnographies of Illness Experiences in Contemporary Finnish Contexts funded by the Academy of Finland. It opens up a vital perspective on the multiplicity and variety of the experience of suffering and that it is particularly through the use of the ethnographic method that these experiences can be brought to light. Keywords: suffering, uncertainty, phenomenology, habitus, agency, cancer, farming

Technology confidence in early stage development of medical devices

Innovation is a critical factor in ensuring commercial success within the area of medical technology. Biotechnology and Healthcare developments require huge financial and resource investment, in-depth research and clinical trials. Consequently, these developments involve a complex multidisciplinary structure, which is inherently full of risks and uncertainty. In this context, early technology assessment and 'proof of concept' is often sporadic and unstructured. Existing methodologies for managing the feasibility stage of medical device development are predominantly suited to the later phases of development and favour detail in optimisation, validation and regulatory approval. During these early phases, feasibility studies are normally conducted to establish whether technology is potentially viable. However, it is not clear how this technology viability is currently measured. This paper aims to redress this gap through the development of a technology confidence scale, as appropriate explicitly to the feasibility phase of medical device design. These guidelines were developed from analysis of three recent innovation studies within the medical device industry.

Uncertainty visualization in 3D scalar data

One problem in most three-dimensional (3D) scalar data visualization techniques is that they often overlook to depict uncertainty that comes with the 3D scalar data and thus fail to faithfully present the 3D scalar data and have risks which may mislead users’ interpretations, conclusions or even decisions. Therefore this thesis focuses on the study of uncertainty visualization in 3D scalar data and we seek to create better uncertainty visualization techniques, as well as to find out the advantages/disadvantages of those state-of-the-art uncertainty visualization techniques. To do this, we address three specific hypotheses: (1) the proposed Texture uncertainty visualization technique enables users to better identify scalar/error data, and provides reduced visual overload and more appropriate brightness than four state-of-the-art uncertainty visualization techniques, as demonstrated using a perceptual effectiveness user study. (2) The proposed Linked Views and Interactive Specification (LVIS) uncertainty visualization technique enables users to better search max/min scalar and error data than four state-of-the-art uncertainty visualization techniques, as demonstrated using a perceptual effectiveness user study. (3) The proposed Probabilistic Query uncertainty visualization technique, in comparison to traditional Direct Volume Rendering (DVR) methods, enables radiologists/physicians to better identify possible alternative renderings relevant to a diagnosis and the classification probabilities associated to the materials appeared on these renderings; this leads to improved decision support for diagnosis, as demonstrated in the domain of medical imaging. For each hypothesis, we test it by following/implementing a unified framework that consists of three main steps: the first main step is uncertainty data modeling, which clearly defines and generates certainty types of uncertainty associated to given 3D scalar data. The second main step is uncertainty visualization, which transforms the 3D scalar data and their associated uncertainty generated from the first main step into two-dimensional (2D) images for insight, interpretation or communication. The third main step is evaluation, which transforms the 2D images generated from the second main step into quantitative scores according to specific user tasks, and statistically analyzes the scores. As a result, the quality of each uncertainty visualization technique is determined.

In Search of Advice for Physicians in Entry-Level Medical Markets

We consider entry-level medical markets for physicians in the United Kingdom. These markets experienced failures which led to the adoption of centralized market mechanisms in the 1960's. However, different regions introduced different centralized mechanisms. We advise physicians who do not have detailed information about the rank-order lists submitted by the other participants. We demonstrate that in each of these markets in a low information environment it is not beneficial to reverse the true ranking of any two acceptable hospital positions. We further show that (i) in the Edinburgh 1967 market, ranking unacceptable matches as acceptable is not profitable for any participant and (ii) in any other British entry-level medical market, it is possible that only strategies which rank unacceptable positions as acceptable are optimal for a physician.

Applying robust control theory to solve problems in bio-medical sciences: study of an apoptotic model

Biological models of an apoptotic process are studied using models describing a system of differential equations derived from reaction kinetics information. The mathematical model is re-formulated in a state-space robust control theory framework where parametric and dynamic uncertainty can be modelled to account for variations naturally occurring in biological processes. We propose to handle the nonlinearities using neural networks.