Patient Sociotechnical Assemblages: The Distributed Cognition of Health Information Management

Personal health records (PHR) are shifting the capabilities and responsibilities of both patients and providers. Influenced by health IT, concepts like patient-centered care, meaningful use, and patient empowerment are commonplace in the healthcare system. As the popularity of personal health records increases, medical providers, healthcare organizations, and health information system stakeholders require a thorough understanding of how patients use these patient facing information portals in conjunction with other artifacts, objects, and practices to manage and maintain their health. Exploring health information management as a distributed sociotechnical assemblage is the conceptual approach of this research. A distributed cognition perspective lends insight to drawing boundaries and establishing connections of personal health information management practices in conjunction with PHR use. The Department of Veterans Affairs provides a unique setting to further understand PHR use and personal health information management practice through the observation of U.S. military veterans enrolled in the My HealtheVet PHR. This context and conceptual framework lead to the research questions for the proposed study: RQ1a: What are the personal health information management practices of veterans who use a personal health record? RQ1b: What health information management practices become distributed beyond the veteran patient? RQ2a: What health information management assemblages emerge from the distributed work of Veterans that use a personal health record? RQ2b: What are key functions of the health information management assemblages of veterans? Through the use of semi-structured in depth interviews, observations, and surveys, data were collected on 22 patients along with their primary care providers and caretakers. Results from a two cycle qualitative coding analysis and analytical cognitive mapping technique reveal bundles of practices for creating reminders, organizing information, and creating information for asking questions and working with primary care providers. Distributed practices emerged that detail the managing of medication, information that is socially distributed, and patient-provider communication through secure messaging. Three health information management assemblage components emerged from the analysis: health events and experiential information, information techniques, and technology and material practices. Each of these components is understood by the ways they become stabilized or destabilized. This research contributes to implications for the design of patient-focused personal health records and informs clinical practice of patient-centered care. The research also makes conceptual and empirical contributions to the practice of health information management and a patient-centered care model of healthcare delivery

Modellierung und Architektur eines mobilen verteilten Systems zur Kompensation prospektiver Gedächtnisdefizite

This work describes the concept and model of structured interactive memory impulses for the compensation of deficits of the prospective memory and their trial in the mobile memory aid system MEMOS. For this purpose patients were equipped with a smartphone, the Personal Memory Assistant (PMA), that uses structured interactive memory impulses to remind them of upcoming tasks and provide situation-dependent guidance through these tasks. MEMOS is the first system world-wide that utilizes structured interactive memory impulses and a decoupled bidirectional communication between patient and caregiver.Context Memory dysfunction is one of the most common results of brain damages caused by strokes or craniocerebral injuries. Impairments of the prospective memory, which is responsible for planning and executing future tasks, have turned out to be particularly challenging for an autonomous life. The compensation of lost abilities by external memory aids that remind patients of prospective tasks is the only possibilityto effectively help affected patients.Methodology.This work and the implementation of MEMOS required the interdisciplinary solution of three main tasks: Analysis of neuropsychologicalrequirements: A patient-friendly memory aid can only be implemented as an easy-to-use electronic assistant that guides patients withsituation-dependent memory impulses through complex tasks. Model of structured interactive memory impulses and system architecture: MEMOS implements situation-dependent reminders using structured interactive memory impulses. For this purpose, complex tasks are split intosubtasks, for which memory impulses are generated and linked with each other. The MEMOS task model is an implementation of the structuredinteractive memory impulses as a machine-manageable structure that guarantees validity and integrity of individual tasks and entire day schedules. MEMOS comprises a mobile component, the PMA, for direct patient interaction and a base system that maintains and coordinates the structured interactive memory impulses. The PMA communicates with the base system using GPRS and can compensate connectivity loss for several hours. The base system is able to detect malfunctions and critical conditions and to automatically alert the responsible caregiver.Patient-friendly adaptation: Success of a memory aid depends on the patients’ acceptance. A survey among patients has revealed the central importance of the memory aid’s adaptation to the requirements andabilities of each individual patient, in addition to general usabilityaspects such as avoiding PMA operation errors, concealing error conditions and easy learnability.Relevance MEMOS was successfully tested in a clinical trial. The number of forgotten or failed tasks was significantly reduced. The model of structured interactive memory impulses has been validated and MEMOS was shown to work in a real-world environmentDiese Arbeit beschreibt die Konzeption und das Modell strukturierter interaktiver Erinnerungsimpulse zur Kompensation von Defiziten des prospektiven Erinnerns und deren Erprobung im mobilen Gedächtnishilfesystems MEMOS. Dazu wurden Patienten mit einem Smartphone, dem Personal Memory Assistant (PMA), ausgerüstet, und mittels strukturierter interaktiver Erinnerungsimpulse an bevorstehende Aufgaben erinnert und situationsabhängig durch diese Aufgaben geführt.MEMOS ist das weltweit erste System, das strukturierte interaktive Erinnerungsimpulse und eine entkoppelte bidirektionale Kommunikation zwischen Patient und Betreuer einsetzt.Kontext Gedächtnisstörungen sind eine der häufigsten Folgen von Hirnschäden nach Schlaganfällen oder Schädel-Hirn-Traumata. Störungen des prospektiven Gedächtnisses, welches verantwortlich für die Planung und Durchführung zukünftiger Aufgaben ist, sind besonders behindernd für ein autonomes Leben. Die Kompensation der ausgefallenen Funktionalität durch externe Gedächtnishilfen, die an bevorstehende Aufgaben erinnern,ist die einzige Möglichkeit, betroffenen Patienten effektiv zu helfen.Methode:Die Realisierung dieser Arbeit und die Implementierung von MEMOS erforderte die interdisziplinäre Bearbeitung von dreiAufgabenschwerpunkten. Analyse der neuropsychologischen Anforderungen: Eine patientengerechte Gedächtnishilfe kann nur in Form eines einfach zu nutzenden elektronischen Assistenten realisiert werden, der den Patienten mittels situationsabhängiger Erinnerungsimpulse durch komplexe Aufgaben führt. Modell der strukturierten interaktiven Erinnerungsimpulse und Systemarchitektur: Situationsabhängige Erinnerungen werden in MEMOS durch strukturierte interaktive Erinnerungsimpulse realisiert. Dazu werden Handlungsabläufe in einfache Teilschritte zerlegt, hierfür Erinnerungsimpulse erzeugt und miteinander verknüpft. Die Umsetzung in eine maschinell verwaltbare Struktur erfolgt im MEMOS-Taskmodell, das Validität und Integrität einzelner Aufgaben (Tasks) sowie kompletter Tagespläne sicher stellt. MEMOS besteht aus einer mobilen Komponente, dem PMA, für die direkte Patienteninteraktion und einem Basissystem für die Verwaltung und Koordination der strukturierten interaktiven Erinnerungsimpulse. Der PMA kommuniziert mit dem Basissystem überMobilfunk und ist in der Lage, auch längere Unterbrechungen zukompensieren. Das Basissystem erkennt Fehlfunktionen und kritische Zustände, wodurch automatisch der verantwortliche Betreuer alarmiert wird. Patientengerechte Anpassung: Der Erfolg einer Gedächtnishilfe hängt von der Akzeptanz durch den Patienten ab. Neben allgemeinenUsability-Aspekten, wie dem Verhindern von Fehlbedienungen, dem Verbergen von Fehlerzuständen und einer einfachen Erlernbarkeit, haben Befragungen die zentrale Bedeutung der individuellen Anpassung der Gedächtnishilfe an die Bedürfnisse und Fähigkeiten der einzelnen Patienten gezeigt.Relevanz MEMOS wurde erfolgreich im Einsatz mit Patienten getestet. Die Zahl vergessener oder gescheiterter Aufgaben wurde deutlich reduziert. Das Modell der strukturierten interaktiven Erinnerungsimpulse wurde validiert und die Praxistauglichkeit von MEMOS konnte gezeigt werden

Narrative niche construction: Memory ecologies and distributed narrative identities

Memories of our personal past are the building blocks of our narrative identity. So, when we depend on objects and other people to remember and construct our personal past, our narrative identity is distributed across our embodied brains and an ecology of environmental resources. This paper uses a cognitive niche construction approach to conceptualise how we engineer our memory ecology and construct our distributed narrative identities. It does so by identifying three types of niche construction processes that govern how we interact with our memory ecology, namely creating, editing, and using resources in our memory ecology. It also conceptualises how identity-relevant information in objects and (family) stories is transmitted vertically, i.e., across different generations of people. Identifying these processes allows us to better understand the cultural information trajectories that constitute our memory ecologies. Thus, what I’ll argue is that our memory ecology distributes our narrative identity and that engineering our memory ecology is a form of narrative niche construction

Investigating the design of Smart Objects in the domain of forgetfulness

PhDWhen we forget things, we feel anxious which can impact our day negatively. Some individuals believe they are forgetful, so emphatically, it disrupts their day. There has been little discussion about perceived forgetfulness in design and HCI, combined with few studied smart objects to aid with memory. However, embedded systems, radio frequency identification (RFID) and HCI research provides inspiration towards creating a solution. Challenges of creating a day-to-day smart object that can enhance a user’s lifestyle are explored and recommended design guidelines for creating a smart object in a specific domain are the focus of this thesis. Using an experience-centred approach, ‘Message Bag’ and ‘Tag Along’ are two purpose built object-based memory aids that have emerged as a result of investigating the design processes for smart objects. The work examines smart objects in the context of forgetting what items to pack in a bag. A solution presented is a device consisting of an RFID system involving (a) pre-tagging essential items; (b) scanning those tagged items and; (c) viewing a corresponding light illuminate, to communicate to the user. Although the conceptual model is simple, success depends on a combination of technical design, usability and aesthetics. These scanning interactions result in a person feeling more confident as suggested through autoethnography reporting, real-world, third person engagements - single user walkouts, conference demos, professional critiques, and residential weekends with potential users (focus group) studies conducted. My work involved extensive autobiographical research and design-led enquiries. Testing was undertaken with investigative prototypes, followed by field testing high-fidelity prototypes. This involved an in-the-wild comparative study involving six users over several months. Results show that people feel more confident and respondents claim no longer needing to continually check items are packed, thus ‘gaining time’, and feeling less forgetful. Although the application of RFID is not new to ubiquitous computing, this implementation, styling and system immediacy is novel. This thesis presents the development of ten prototypes as well as design guidelines. The research provides a solid base for further exploration, and includes discovery of the importance of a user’s style universe and extreme ease-of-use. I conclude with the presentation of early positive results including; (i) the unique form factor becomes a reminder itself and; (ii) usability coupled with the intuitive nature of the system is shown to be essential. We found that when you are creating a smart object, usability and an intuitive nature is even more important than in a standard system. When dealing within the domain of forgetfulness, this is paramount.This research was funded by the Engineering and Physical Sciences Research Council (EPSRC) through the Media and Arts Technology Doctoral Training Centre from the School of Electronic Engineering and Computer Science at Queen Mary University of London

Design Research For Personal Information Management Systems To Support Undergraduate Students

This dissertation investigated the personal information management (PIM) behaviors and practices of undergraduate college students during a four month academic semester period. Qualitative data on the day-to-day PIM practices for 15 students enrolled in an honors biology class were collected through in-depth observations and interviews. Four students experimented with MyLifeBits--a next-generation PIM system developed at Microsoft Research. A participatory design session involving six students explored and identified new directions for PIM design. Analysis of the field data revealed that students engage regularly in project management activities, and their work is often highly collaborative. Students were observed to have difficulty with core PIM activities, such as managing tasks and reminders (and both PIM and technical skills vary widely among students). Students were observed to manage a diverse array of information formats, applications, and media, which are rarely integrated. Gaps in understanding and awareness among students and instructors were also noted. MyLifeBits was found to be intuitive and effective for visual browsing and refinding, although specific elements of the MyLifeBits user interface could likely be improved to support efficient task completion. The MyLifeBits system includes annotation, collection building, and other features that may support new approaches for making order and stimulating reflection. Observations of student usage suggested further design modifications to improve these features and supporting user interfaces. Implications for future research and design include: Incorporating social awareness and communication into PIM systems to help reduce gaps in understanding and facilitate reflection; integrating collaboration technologies into PIM systems to support students' highly collaborative work practices; providing tools to stimulate reflection (e.g., personal analytics) and create reflective artifacts (e.g., journals, multimedia scrapbooks); shifting the focus of design to outcomes (such as, "getting my assignment done on time, and in the way the teacher expects") that PIM supports rather than the PIM process itself; and developing ways to scaffold students' learning of PIM skills, such as metadata creation, project analysis and management, collaboration, and reflection

Speech-Language Pathologists\u27 Assessment and Treatment of Dementia: A Mixed Methods Study

The intent of this research was to investigate how speech-language pathologists (SLPs) are assessing and treating people with dementia (PWD). To examine this the researcher first completed a literature review to determine prominent evaluation and treatment procedures for dementia. Then the researcher set out to identify whether there was a gap between the external evidence found in the literature and the practice patterns of SLPs, and subsequently attempt to delineate potential reasons for the differences. Using a mixed-method design, the researcher conducted 10 phone interviews and 114 SLPs participated in an online survey. The researcher engaged in grounded theory coding procedures for the interviews. Survey data were analyzed based on demographic groups (e.g., rural versus urban) using non-parametric procedures. In general, the results suggested that SLPs are completing some of the assessment and treatment procedures identified in the literature. In regard to assessment, there was a departure from the literature in terms of the need to screen for vision/hearing and depression and engaging differential diagnosis to inform the evaluation. Both qualitative and quantitative results yielded a discrepancy in the use of vocabulary across participants. In fact, some SLPs reported engaging in procedures without having a name for them. SLPs with more years of experience and more dementia-related CEUs had higher confidence in completing several dementia-related procedures than those with fewer years/CEUs. Participants with fewer dementia-CEUs and a smaller caseload of PWD were less familiar with treatment approaches identified in the extant literature than those with more CEUs/higher caseloads. Participants with fewer dementia-CEUs reported using external memory aids less frequently than those with more CEUs; and, SLPs with fewer years of experience used errorless learning less frequently than those with more years of experience. Barriers that emerged that identify sources of gaps between the literature and clinical practice (i.e., implementation of EBP) included: lack of time, lack of carryover by caregivers, insurance barriers, lack of applicability of research, limited evidence, and lack of materials/resources. Advisor: Kristy Weisslin

AN APPROACH TO MACHINE DEVELOPMENT OF MUSICAL ONTOGENY

This Thesis pursues three main objectives: (i) to use computational modelling to explore how music is perceived, cognitively processed and created by human beings; (ii) to explore interactive musical systems as a method to model and achieve the transmission of musical influence in artificial worlds and between humans and machines; and (iii) to experiment with artificial and alternative developmental musical routes in order to observe the evolution of musical styles. In order to achieve these objectives, this Thesis introduces a new paradigm for the design of computer interactive musical systems called the Ontomemetical Model of Music Evolution - OMME, which includes the fields of musical ontogenesis and memetlcs. OMME-based systems are designed to artificially explore the evolution of music centred on human perceptive and cognitive faculties. The potential of the OMME is illustrated with two interactive musical systems, the Rhythmic Meme Generator (RGeme) and the Interactive Musical Environments (iMe). which have been tested in a series of laboratory experiments and live performances. The introduction to the OMME is preceded by an extensive and critical overview of the state of the art computer models that explore musical creativity and interactivity, in addition to a systematic exposition of the major issues involved in the design and implementation of these systems. This Thesis also proposes innovative solutions for (i) the representation of musical streams based on perceptive features, (ii) music segmentation, (iii) a memory-based music model, (iv) the measure of distance between musical styles, and (v) an impi*ovisation-based creative model