Clinical foundations and information architecture for the implementation of a federated health record service

Clinical care increasingly requires healthcare professionals to access patient record information that may be distributed across multiple sites, held in a variety of paper and electronic formats, and represented as mixtures of narrative, structured, coded and multi-media entries. A longitudinal person-centred electronic health record (EHR) is a much-anticipated solution to this problem, but its realisation is proving to be a long and complex journey. This Thesis explores the history and evolution of clinical information systems, and establishes a set of clinical and ethico-legal requirements for a generic EHR server. A federation approach (FHR) to harmonising distributed heterogeneous electronic clinical databases is advocated as the basis for meeting these requirements. A set of information models and middleware services, needed to implement a Federated Health Record server, are then described, thereby supporting access by clinical applications to a distributed set of feeder systems holding patient record information. The overall information architecture thus defined provides a generic means of combining such feeder system data to create a virtual electronic health record. Active collaboration in a wide range of clinical contexts, across the whole of Europe, has been central to the evolution of the approach taken. A federated health record server based on this architecture has been implemented by the author and colleagues and deployed in a live clinical environment in the Department of Cardiovascular Medicine at the Whittington Hospital in North London. This implementation experience has fed back into the conceptual development of the approach and has provided "proof-of-concept" verification of its completeness and practical utility. This research has benefited from collaboration with a wide range of healthcare sites, informatics organisations and industry across Europe though several EU Health Telematics projects: GEHR, Synapses, EHCR-SupA, SynEx, Medicate and 6WINIT. The information models published here have been placed in the public domain and have substantially contributed to two generations of CEN health informatics standards, including CEN TC/251 ENV 13606

The Business Case for Quality: Ending Business as Usual in American Health Care

Examines some of the reasons why establishing a business case for improving health care is so difficult, and considers possible solutions. Includes comments on quality provisions of the Medicare Prescription Drug Improvement and Modernization Act of 2003

Improving Quality and Achieving Equity: A Guide for Hospital Leaders

Outlines the need to address racial/ethnic disparities in health care, highlights model practices, and makes step-by-step recommendations on creating a committee, collecting data, setting quality measures, evaluating, and implementing new strategies

Systematic review of clinical practice guidelines recommendations about primary cardiovascular disease prevention for older adults

Background: Clinical care for older adults is complex and represents a growing problem. They are a diverse patient group with varying needs, frequent presence of multiple comorbidities, and are more susceptible to treatment harms. Thus Clinical Practice Guidelines (CPGs) need to carefully consider older adults in order to guide clinicians. We reviewed CPG recommendations for primary cardiovascular disease (CVD) prevention and examined the extent to which CPGs address issues important for older people identified in the literature. Methods: We searched: 1) two systematic reviews on CPGs for CVD prevention and 2) the National CPG Clearinghouse, G-I-N International CPG Library and Trip databases for CPGs for CVD prevention, hypertension and cholesterol. We conducted our search between April and December 2013. We excluded CPGs for diabetes, chronic kidney disease, HIV, lifestyle, general screening/prevention, and pregnant or pediatric populations. Three authors independently screened citations for inclusion and extracted data. The primary outcomes were presence and extent of recommendations for older people including discussion of: (1) available evidence, (2) barriers to implementation of the CPG, and (3) tailoring management for this group. Results: We found 47 eligible CPGs. There was no mention of older people in 4 (9 %) of the CPGs. Benefits were discussed more frequently than harms. Twenty-three CPGs (49 %) discussed evidence about potential benefits and 18 (38 %) discussed potential harms of CVD prevention in older people. Most CPGs addressed one or more barriers to implementation, often as a short statement. Although 27 CPGs (58 %) mentioned tailoring management to the older patient context (e.g. comorbidities), concrete guidance was rare. Conclusion: Although most CVD prevention CPGs mention the older population to some extent, the information provided is vague and very limited. Older adults represent a growing proportion of the population. Guideline developers must ensure they consider older patients’ needs and provide appropriate advice to clinicians in order to support high quality care for this group. CPGs should at a minimum address the available evidence about CVD prevention for older people, and acknowledge the importance of patient involvement.NHMR

Mental Health and Work: Impact, Issues and Good Practices

[From Introduction] There is growing evidence of the global impact of mental illness. Mental health problems are among the most important contributors to the burden of disease and disability worldwide. Five of the 10 leading causes of disability worldwide are mental health problems. They are as relevant in low-income countries as they are in rich ones, cutting across age, gender and social strata. Furthermore, all predictions indicate that the future will see a dramatic increase in mental health problems

Change through ethical dialogue. A theoretical and qualitative study of lifestyle counselling in general practice

Many patients meet the challenge of reordering fundamental priorities in life. The reordering can entail lifestyle changes for preventing disease, carrying out extensive treatment plans, or adapting to new dysfunctions in everyday life. Adaptive change may be of crucial importance for health and quality of life, and yet involve practical, emotional and social burdens that become insurmountable obstacles for the affected individual. Being central agents in the health service, general practitioners (GPs) are confronted with the challenge of finding ways to help their patients deal with difficult adaptations to risk, illness and medical interventions, through supportive interactions that integrate biomedical and personal issues. It seems, however, that patients do not always receive the help they need. The present study explores the theory and practice of doctor-patients dialogue, using lifestyle counselling as the field of study, a field where clinical work entails complex interactional challenges for doctors and patients. When patients are advised or perceive a need to change behaviour for medical reasons, deep-seated aspects of their value-systems are stirred. Lifestyle express and are rooted in people’s values and norms, in what is tacitly considered good, right and desirable in everyday life. Lifestyle change is thus a matter of individual ethics, often entailing dilemmas where medical goals may conflict with individual perceptions of a good life. The instrumental rationality of science, including biomedicine, does not contain the conceptual tools physicians need for dealing with the highly subjective, cultural, value-laden and dynamic aspects of human thought and behaviour that characterise and constitute health and illness. Patient-centred medicine (PCM) has evolved as a loosely knit body of theory to help clinicians integrate the biomedical perspective, anchored in disease theory, with the phenomenological patient perspective, rooted in subjective, relational experiences and individual values and goals. Patient-centred medicine advocates deliberative dialogue as a general approach that may reveal and clarify patients’ practical circumstances, values and norms, and thus allow doctor and patient to reach common ground - a shared understanding of what is at stake for an individual person in a given situation of illness or health risk. Starting from the claim that PCM is somewhat under-theorised and lacking in its detailed analysis of deliberative doctor-patient dialogue, the present project examines the relevance of philosopher Jürgen Habermas’s theory of communicative action (TCA) for lifestyle consultations in general practice. Habermas’s theory is based on the assumption that human rationality is defined by our ability to let our actions be guided by a consensus that is achieved through the use of language. It claims that a person is rational when arguments are reasoned by factual or empirically-based concerns, normative concerns, or subjective feelings. The latter two categories distinguish TCA from theories where only arguments referring to empirically verifiable facts qualify as rational (“instrumental rationality”). Habermas uses the concept lifeworld to designate the objective, social and subjective circumstances of individual existence that may serve as the basis for rational arguments and decisions. The project attempts to clarify how TCA may be medically relevant, and identify adjustments needed when the principles of TCA, developed for democratic deliberation, are introduced in a dyadic helping relationship characterised by asymmetry of knowledge and power. The overarching ambition is to operationalise elements of a deliberative theory in a way that may lead to improved clinical dialogues within a PCM framework. The thesis consists of one theoretical and two empirical papers. In GP consultations, we explored physician communication patterns that enhanced or obstructed the possibilities for patients to reach good, right and practicable decisions in lifestyle counselling. In interviews, patients’ needs and preferences in consultation dialogues were explored. The study suggests that Habermas’s theory of communicative action is highly relevant for dialogues in general practice. However, the demand that dialogue partners be on an equal footing poses a challenge in the context of medical practice. The asymmetric relationship between doctor and patient necessitates adjustments to the theory, allowing the doctor to take a leader’s responsibility, based on a mandate from the patient and a professional foundation of care, respect and willingness to learn from the patient. Through a mutually respectful dialogue where the doctor is open-minded and changes his or her mind as relevant arguments are brought forth, lifeworld issues, patient values and norms can be verbalised and understood in medical dialogue, and used as anchoring points for changes and adaptations. Whereas medical counselling based on disease theory and instrumental rationality may obstruct the clarif ication of patients’ subjective values and norms, and result in frustrated efforts to change individual priorities and behaviour, the present study suggests that Habermas’s theory, appropriately adjusted, can provide GPs with communicative tools that may give rise to an expanded form of patient autonomy and produce decisions which are good, right and practicable for the patient

User-centered visual analysis using a hybrid reasoning architecture for intensive care units

One problem pertaining to Intensive Care Unit information systems is that, in some cases, a very dense display of data can result. To ensure the overview and readability of the increasing volumes of data, some special features are required (e.g., data prioritization, clustering, and selection mechanisms) with the application of analytical methods (e.g., temporal data abstraction, principal component analysis, and detection of events). This paper addresses the problem of improving the integration of the visual and analytical methods applied to medical monitoring systems. We present a knowledge- and machine learning-based approach to support the knowledge discovery process with appropriate analytical and visual methods. Its potential benefit to the development of user interfaces for intelligent monitors that can assist with the detection and explanation of new, potentially threatening medical events. The proposed hybrid reasoning architecture provides an interactive graphical user interface to adjust the parameters of the analytical methods based on the users' task at hand. The action sequences performed on the graphical user interface by the user are consolidated in a dynamic knowledge base with specific hybrid reasoning that integrates symbolic and connectionist approaches. These sequences of expert knowledge acquisition can be very efficient for making easier knowledge emergence during a similar experience and positively impact the monitoring of critical situations. The provided graphical user interface incorporating a user-centered visual analysis is exploited to facilitate the natural and effective representation of clinical information for patient care

Conceptual graph-based knowledge representation for supporting reasoning in African traditional medicine

Although African patients use both conventional or modern and traditional healthcare simultaneously, it has been proven that 80% of people rely on African traditional medicine (ATM). ATM includes medical activities stemming from practices, customs and traditions which were integral to the distinctive African cultures. It is based mainly on the oral transfer of knowledge, with the risk of losing critical knowledge. Moreover, practices differ according to the regions and the availability of medicinal plants. Therefore, it is necessary to compile tacit, disseminated and complex knowledge from various Tradi-Practitioners (TP) in order to determine interesting patterns for treating a given disease. Knowledge engineering methods for traditional medicine are useful to model suitably complex information needs, formalize knowledge of domain experts and highlight the effective practices for their integration to conventional medicine. The work described in this paper presents an approach which addresses two issues. First it aims at proposing a formal representation model of ATM knowledge and practices to facilitate their sharing and reusing. Then, it aims at providing a visual reasoning mechanism for selecting best available procedures and medicinal plants to treat diseases. The approach is based on the use of the Delphi method for capturing knowledge from various experts which necessitate reaching a consensus. Conceptual graph formalism is used to model ATM knowledge with visual reasoning capabilities and processes. The nested conceptual graphs are used to visually express the semantic meaning of Computational Tree Logic (CTL) constructs that are useful for formal specification of temporal properties of ATM domain knowledge. Our approach presents the advantage of mitigating knowledge loss with conceptual development assistance to improve the quality of ATM care (medical diagnosis and therapeutics), but also patient safety (drug monitoring)

Decision-making preceding transcatheter aortic valve implantation in frail older adults : Vulnerable autonomy, novel frailty scoring and clinical outcomes important to treatment strategy. A mixed method study

Introduction: Transcatheter aortic valve implantation (TAVI), also known as transcatheter aortic valve replacement (TAVR), is a new technique for treating severe, symptomatic aortic stenosis. The mean age for TAVI patients is over 80 years and most of the patients have comorbidities and frailty. Some patients may be too frail and have a short life expectancy even after the intervention, and will benefit more from a palliative approach. Established surgical scores have limitations in determining risk among candidates for TAVI. Assessment of frailty might help to estimate the mortality risk and identify patients likely to benefit from treatment. On the other hand, there is a risk of ageism and undertreating older adults. How can we select the right patients for the procedure? Patient autonomy is a leading principle in bioethics and a basis for shared decision-making. In the light of the increasing focus on patient-centred care, this project has explored TAVI patients’ experience of the decision-making process preceding intervention. This thesis consists of three studies focusing on the decision-making process prior to TAVI. Paper 1 focuses on the patient perspective, paper 2 takes the doctors’ viewpoint and paper 3 includes both perspectives. Aims: The aim of paper one was to explore conditions for autonomous choice as experienced by older adults who recently underwent transcatheter aortic valve implantation. The aim of paper two was to develop a frailty score to guide the decision for TAVI. The aim of paper three was to examine baseline characteristics and clinical outcomes important to older adults and their doctors to enhance shared decision-making prior to transcatheter aortic valve implantation.   Materials and methods: We conducted a mixed method study, with one qualitative sub-study (paper 1) and two quantitative sub-studies (papers 2 and 3). All patients underwent TAVI due to severe and symptomatic aortic stenosis. The qualitative study involved semi-structured interviews of a purposive sample of ten older adults after the procedure. Analysis was by systematic text condensation. In paper 2 we conducted a prospective observational study in 82 patients ≥70 years accepted for TAVI from 2013 to 2015 and 65 patients ≥ 80 years (from a concomitant study on delirium) accepted from 2011 to 2013, giving a total of 147 patients. Prior to the procedure, a geriatric assessment (GA) was completed in 142 patients (missing data for calculating frailty score in five patients). Based on this, an eight-element frailty score with a 0–9 (least frail to most frail) scale was developed. In paper 3 we conducted a prospective, observational study of 82 TAVI patients ≥70 years (the last cohort of study 2), with two-year follow-up focusing on baseline frailty status (including cognitive deficits) and outcome measures important for shared decision-making prior to the procedure. Results: In paper 1, the median age of the included patients was 83.5 years (range 73-89 years). Even when choice seemed difficult or lacking, TAVI patients deliberately took the chance presented to them by taking into account risk assessment, ambivalence and fate. They regarded declining the treatment as worse than accepting the risk related to the procedure. The experience of being carefully advised by their doctor formed the basis of autonomous trust. This trust mitigated ambivalence about the procedure and risks. TAVI patients claimed that it had to be their decision and expressed feelings consistent with self-empowerment. Despite this, choosing the procedure as an obligation to their family or passively accepting it were also reported. In paper 2, patients had a mean age of 83 (SD 4) years, and 54% were women. The novel GA frailty score predicted two-year mortality in Cox analysis, also when adjusted for gender, age and logistic EuroSCORE (HR 1.75, 95% CI: 1.28–2.42, P < 0.001). A ROC curve analysis indicated that a GA frailty cut-off score of ≥ 4 predicted two-year mortality with a specificity of 80% (95% CI: 73%–86%) and a sensitivity of 60% (95% CI: 36%–80%), and the area under the curve was 0.81 (CI 0.71–0.90). All-cause two-year mortality was 11%. In paper 3, mean age was 83 years (SD 4.7) and 48% were women. Fifteen patients (18%) had a Mini Mental Status Examination (MMSE) score below 24 points at baseline, indicating cognitive impairment or dementia, while five patients had an MMSE below 20 points. At baseline and six months, mean New York Heart Association (NYHA) class was 2.5 (SD 0.6) and 1.4 (SD 0.6) (p<0.001) respectively. Between baseline and six months there was no change in the mean scores on the Nottingham Extended Activities of Daily Living (NEADL) scale, with 54.2 (SD 11.5) and 54.5 (SD 10.3) points, mean difference 0.3 (p =0.7). At two years, six patients (7%) had died, four (5%, n=79) lived in a nursing home, six (7%) had contracted infective endocarditis, and four (5%) had had a disabling stroke. Conclusion: This study provides empirically-based descriptions of the conditions for TAVI patients’ autonomy as experienced in the decision-making process, to assist clinicians obtaining valid informed consent. We found that a frailty scale based on geriatric assessment predicted two-year mortality in TAVI patients beyond the established risk score. Patients had symptom improvement and could maintain activities of daily living six months after TAVI, and had low mortality after two years. Rarely, severe complications occurred, such as stroke and endocarditis. Some patients had cognitive impairment or dementia at baseline, which might have influenced the decision-making process. Our findings provide support to identify patients with higher risk and lower expected benefit after TAVI, and circumstances under which the procedure might be futile. The decision to offer the procedure should be a careful evaluation by the heart team, and involve considering frailty, symptom burden and technical challenges, and exploring patient preferences, before offering TAVI