A phenomenological investigation of patients' lived experiences of medicines adherence: a novel perspective for future intervention development

Approximately 50% of medications are not used as prescribed, this phenomenon is known as non-adherence. The literature concerning this phenomenon focuses on reasons medicines are not taken, dissecting experiences to identify mechanisms that act as barriers and facilitators to using medicines as prescribed. Theoretical frameworks and models have been developed that conceptualise the phenomenon, enabling interventions to be established to improve medicines use. However these interventions have yet to demonstrate sustainable improvements in adherence. A novel perspective of the adherence phenomenon may direct future intervention development that will lead to improved adherence. This project evaluated current literature concerning the adherence phenomenon; concluding that a largely ‘biomedical perspective’ had been taken to understanding patients’ medicines use and that further work was needed that approached the phenomenon from with a novel outlook. A systematic review and thematic synthesis was conducted of evidence that, through phenomenological methods, rejected previously held beliefs and concluded that adherence was experienced by patients as an interaction between the patient’s and the medicine’s identity. The systematic review identified a gap in the literature that described adherence from patients’ lived experiences across different disease states. Using phenomenology, empirical research included forty-one interviews that explored patients’ experiences of medicines use across five disease areas, namely cardiovascular disease, gout, chronic obstructive pulmonary disease, cancer and diabetes. This uncovered a novel description of the phenomenon as a construct of social interaction between the patient, their product and wider society (embodied as family and friends, healthcare professionals, the media and policy). Three focus groups were conducted to validate these findings and locate patients’ perspectives of interventions within this novel description. Analyses from these focus groups identified that current adherence interventions represented micro-social interactions between the patient and the product, with few interventions developed that utilise patients’ interactions with wider society. These works are synthesised to present new directions for future intervention development that might seek to utilise patients’ interactions with friends, family, healthcare professionals and policy to improve adherence

MuCIGREF: multiple computer-interpretable guideline representation and execution framework for managing multimobidity care

Clinical Practice Guidelines (CPGs) supply evidence-based recommendations to healthcare professionals (HCPs) for the care of patients. Their use in clinical practice has many benefits for patients, HCPs and treating medical centres, such as enhancing the quality of care, and reducing unwanted care variations. However, there are many challenges limiting their implementations. Initially, CPGs predominantly consider a specific disease, and only few of them refer to multimorbidity (i.e. the presence of two or more health conditions in an individual) and they are not able to adapt to dynamic changes in patient health conditions. The manual management of guideline recommendations are also challenging since recommendations may adversely interact with each other due to their competing targets and/or they can be duplicated when multiple of them are concurrently applied to a multimorbid patient. These may result in undesired outcomes such as severe disability, increased hospitalisation costs and many others. Formalisation of CPGs into a Computer Interpretable Guideline (CIG) format, allows the guidelines to be interpreted and processed by computer applications, such as Clinical Decision Support Systems (CDSS). This enables provision of automated support to manage the limitations of guidelines. This thesis introduces a new approach for the problem of combining multiple concurrently implemented CIGs and their interrelations to manage multimorbidity care. MuCIGREF (Multiple Computer-Interpretable Guideline Representation and Execution Framework), is proposed whose specific objectives are to present (1) a novel multiple CIG representation language, MuCRL, where a generic ontology is developed to represent knowledge elements of CPGs and their interrelations, and to create the multimorbidity related associations between them. A systematic literature review is conducted to discover CPG representation requirements and gaps in multimorbidity care management. The ontology is built based on the synthesis of well-known ontology building lifecycle methodologies. Afterwards, the ontology is transformed to a metamodel to support the CIG execution phase; and (2) a novel real-time multiple CIG execution engine, MuCEE, where CIG models are dynamically combined to generate consistent and personalised care plans for multimorbid patients. MuCEE involves three modules as (i) CIG acquisition module, transfers CIGs to the personal care plan based on the patient’s health conditions and to supply CIG version control; (ii) parallel CIG execution module, combines concurrently implemented multiple CIGs by performing concurrency management, time-based synchronisation (e.g., multi-activity merging), modification, and timebased optimisation of clinical activities; and (iii) CIG verification module, checks missing information, and inconsistencies to support CIG execution phases. Rulebased execution algorithms are presented for each module. Afterwards, a set of verification and validation analyses are performed involving real-world multimorbidity cases studies and comparative analyses with existing works. The results show that the proposed framework can combine multiple CIGs and dynamically merge, optimise and modify multiple clinical activities of them involving patient data. This framework can be used to support HCPs in a CDSS setting to generate unified and personalised care recommendations for multimorbid patients while merging multiple guideline actions and eliminating care duplications to maintain their safety and supplying optimised health resource management, which may improve operational and cost efficiency in real world-cases, as well

The Knowledge Grid: A Platform to Increase the Interoperability of Computable Knowledge and Produce Advice for Health

Here we demonstrate how more highly interoperable computable knowledge enables systems to generate large quantities of evidence-based advice for health. We first provide a thorough analysis of advice. Then, because advice derives from knowledge, we turn our focus to computable, i.e., machine-interpretable, forms for knowledge. We consider how computable knowledge plays dual roles as a resource conveying content and as an advice enabler. In this latter role, computable knowledge is combined with data about a decision situation to generate advice targeted at the pending decision. We distinguish between two types of automated services. When a computer system provides computable knowledge, we say that it provides a knowledge service. When computer system combines computable knowledge with instance data to provide advice that is specific to an unmade decision we say that it provides an advice-giving service. The work here aims to increase the interoperability of computable knowledge to bring about better knowledge services and advice-giving services for health. The primary motivation for this research is the problem of missing or inadequate advice about health topics. The global demand for well-informed health advice far exceeds the global supply. In part to overcome this scarcity, the design and development of Learning Health Systems is being pursued at various levels of scale: local, regional, state, national, and international. Learning Health Systems fuse capabilities to generate new computable biomedical knowledge with other capabilities to rapidly and widely use computable biomedical knowledge to inform health practices and behaviors with advice. To support Learning Health Systems, we believe that knowledge services and advice-giving services have to be more highly interoperable. I use examples of knowledge services and advice-giving services which exclusively support medication use. This is because I am a pharmacist and pharmacy is the biomedical domain that I know. The examples here address the serious problems of medication adherence and prescribing safety. Two empirical studies are shared that demonstrate the potential to address these problems and make improvements by using advice. But primarily we use these examples to demonstrate general and critical differences between stand-alone, unique approaches to handling computable biomedical knowledge, which make it useful for one system, and common, more highly interoperable approaches, which can make it useful for many heterogeneous systems. Three aspects of computable knowledge interoperability are addressed: modularity, identity, and updateability. We demonstrate that instances of computable knowledge, and related instances of knowledge services and advice-giving services, can be modularized. We also demonstrate the utility of uniquely identifying modular instances of computable knowledge. Finally, we build on the computing concept of pipelining to demonstrate how computable knowledge modules can automatically be updated and rapidly deployed. Our work is supported by a fledgling technical knowledge infrastructure platform called the Knowledge Grid. It includes formally specified compound digital objects called Knowledge Objects, a conventional digital Library that serves as a Knowledge Object repository, and an Activator that provides an application programming interface (API) for computable knowledge. The Library component provides knowledge services. The Activator component provides both knowledge services and advice-giving services. In conclusion, by increasing the interoperability of computable biomedical knowledge using the Knowledge Grid, we demonstrate new capabilities to generate well-informed health advice at a scale. These new capabilities may ultimately support Learning Health Systems and boost health for large populations of people who would otherwise not receive well-informed health advice.PHDInformationUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttps://deepblue.lib.umich.edu/bitstream/2027.42/146073/1/ajflynn_1.pd

From Isolation to Inclusion: Embracing Local Perspectives in Examining the Treatment Model of Care for Aboriginal Persons Affected by Tuberculosis or Leprosy in the Kimberley Region, North Western Australia

In the remote Kimberley region of North Western Australia, tuberculosis (TB) and leprosy continue to affect a small number of Aboriginal people, despite historical efforts to eliminate either disease. Treatment, predominantly antibiotic therapy, is a principal therapeutic intervention used to cure TB and leprosy and halt infection transmission. Decisions made around treatment therefore impact not only the individual person affected, but also their families and communities. The well-worn models of Directly Observed Therapy (DOT) and case management are used nationally to assist treatment continuity and completion. Neither model has been substantiated for cultural appropriateness nor for meeting the specific needs of Aboriginal people. Given the important role of treatment, this thesis uses decolonial theory to critically examine how culturally secure and person-centred care practice could be better incorporated into the current treatment model of care used in the Kimberley region for Aboriginal persons affected by TB or leprosy. To achieve this, qualitative methods were employed to explore the lived experience of Aboriginal persons affected by either disease, as well as community members and Health Care Workers involved in care. In addition, archival research of historical documents relating to treatment was conducted. The findings of this research revealed deeper narratives about medication safety concerns, the importance of family history knowledge for early treatment intervention, and challenges relating to integrating TB and leprosy management into primary health care due to competing priorities of more prevalent chronic diseases. Health care relationships were found to play a key role in optimising treatment. However, gaps and inconsistences were identified within these relationships in the areas of two-way trust, communicating importance and consequences of treatment, providing feedback, shared treatment decision-making, and the provision of culturally respectful support. Family relationships and connection to culture were also significant for psychosocial support. Understanding the history of TB and leprosy treatment specific to the region was found to be an integral part of understanding contemporary treatment models and in identifying ongoing colonising within the way health care services for the treatment of TB and leprosy are delivered. Using these findings, a novel treatment model of care is presented. This offers theoretical and practical strategies to re-think and apply culturally responsive approaches to optimising treatment for Aboriginal persons affected by TB or leprosy. This has the potential benefit of improved wellbeing and elimination of disease for current and future generations

Recontextualising the lived experience of hepatitis C and its treatment

BACKGROUND: Rapid advances in the treatment of the hepatitis C virus (HCV) have been witnessed in clinical practice over the last five years. Pharmacological developments have ended the reliance on the drug interferon-α as a component of successful therapy, heralding the dawn of a new era in the fight against the disease. How this new era is being understood and experienced by those individuals living with the virus is currently unknown.METHODS: A purposive sample of 20 individuals participated in face-to-face semi-structured interviews exploring their experience of living with HCV. Eight of these participants were interviewed again following a period of interferon-free treatment. All interviews were conducted between June 2015 and March 2016. The interviews were transcribed verbatim and explored using thematic analysis, underpinned by social phenomenological theory.RESULTS: Analysis of the corpus of data resulted in three overarching themes entitled ‘positioning HCV’, ‘beyond a physical burden’ and ‘reconstructing uncertainty’. These themes offer original insight into how this new era of therapy is being realised by those living with the virus. The experience of interferon-free treatment was also explored through the narratives of those individuals who participated in a further post-treatment interview. Three further themes entitled ‘expectations and realisations’, ‘an honour and a pleasure’ and ‘treatment needs’ encapsulate their experience.DISCUSSION: The findings from this study recontextualise the lived experience of HCV within a new era of treatment. In doing so, they expose social and emotional spheres of illness, and a perception of illness chronicity, which remain untouched by the treatment revolution. Further, this work emphasises how treatment inequalities fundamentally underpin multiple aspects of the daily lived experience, and are integral to how those living with HCV articulate the disease. The implications of this work challenge current HCV policy and clinical practice

Front-Line Physicians' Satisfaction with Information Systems in Hospitals

Day-to-day operations management in hospital units is difficult due to continuously varying situations, several actors involved and a vast number of information systems in use. The aim of this study was to describe front-line physicians' satisfaction with existing information systems needed to support the day-to-day operations management in hospitals. A cross-sectional survey was used and data chosen with stratified random sampling were collected in nine hospitals. Data were analyzed with descriptive and inferential statistical methods. The response rate was 65 % (n = 111). The physicians reported that information systems support their decision making to some extent, but they do not improve access to information nor are they tailored for physicians. The respondents also reported that they need to use several information systems to support decision making and that they would prefer one information system to access important information. Improved information access would better support physicians' decision making and has the potential to improve the quality of decisions and speed up the decision making process.Peer reviewe

Biosocial Worlds

Biosocial Worlds presents state-of-the-art contributions to anthropological reflections on the porous boundaries between human and non-human life – biosocial worlds. Based on changing understandings of biology and the social, it explores what it means to be human in these worlds. Growing separation of scientific disciplines for more than a century has maintained a separation of the ‘natural’ and the ‘social’ that has created a space for projections between the two. Such projections carry a directional causality and so constitute powerful means to establish discursive authority. While arguing against the separation of the biological and the social in the study of human and non-human life, it remains important to unfold the consequences of their discursive separation. Based on examples from Botswana, Denmark, Mexico, the Netherlands, Uganda, the UK and USA, the volume explores what has been created in the space between ‘the social’ and ‘the natural’, with a view to rethink ‘the biosocial’. Health topics in the book include diabetes, trauma, cancer, HIV, tuberculosis, prevention of neonatal disease and wider issues of epigenetics. Many of the chapters engage with constructions of health and disease in a wide range of environments, and engage with analysis of the concept of ‘environment’. Anthropological reflection and ethnographic case studies explore how ‘health’ and ‘environment’ are entangled in ways that move their relation beyond interdependence to one of inseparability. The subtitle of this volume captures these insights through the concept of ‘health environment’, seeking to move the engagement of anthropology and biology beyond deterministic projections. ; Biosocial Worlds brings together state-of-the-art contributions to critical anthropological reflection on, and ethnographic exploration of, human and non-human life in the light of our changing understandings of biology and what it means to be human

Biosocial Worlds: Anthropology of health environments beyond determinism

Biosocial Worlds presents state-of-the-art contributions to anthropological reflections on the porous boundaries between human and non-human life – biosocial worlds. Based on changing understandings of biology and the social, it explores what it means to be human in these worlds. Growing separation of scientific disciplines for more than a century has maintained a separation of the ‘natural’ and the ‘social’ that has created a space for projections between the two. Such projections carry a directional causality and so constitute powerful means to establish discursive authority. While arguing against the separation of the biological and the social in the study of human and non-human life, it remains important to unfold the consequences of their discursive separation. Based on examples from Botswana, Denmark, Mexico, the Netherlands, Uganda, the UK and USA, the volume explores what has been created in the space between ‘the social’ and ‘the natural’, with a view to rethink ‘the biosocial’. Health topics in the book include diabetes, trauma, cancer, HIV, tuberculosis, prevention of neonatal disease and wider issues of epigenetics. Many of the chapters engage with constructions of health and disease in a wide range of environments, and engage with analysis of the concept of ‘environment’. Anthropological reflection and ethnographic case studies explore how ‘health’ and ‘environment’ are entangled in ways that move their relation beyond interdependence to one of inseparability. The subtitle of this volume captures these insights through the concept of ‘health environment’, seeking to move the engagement of anthropology and biology beyond deterministic projections

Surviving Oncology: Living With Cancer in the Wake of Integrative Care

This dissertation analyzes the emerging medical field of integrative oncology, attending to how this approach to cancer treatment unsettles and reconfigures existing biomedical ideas about bodies and cancer. Informed by twelve months of multi-sited ethnographic study conducted in the state of California, it examines the attempts made by integrative practitioners to provide whole patient care by incorporating complementary medicines such as Ayurveda and Chinese medicine into conventional oncology. I suggest that this approach enacts a kind of sensitivity for how cancer is lived as a disease conditioned by emotional, psychological, social, and environmental factors, requiring treatments attentive to these dimensions. Throughout this study I grapple with the intentions of integrative oncologists and the realities of the political economy of medicine and insurance in the United States that leaves integrative care out of the reach of most people, producing a situation where many are strained to imagine different ways of surviving oncology. At the core of this project is a concern for what it means and what it takes to live well with cancer in biomedicine