Towards an interoperable healthcare information infrastructure - working from the bottom up

Historically, the healthcare system has not made effective use of information technology. On the face of things, it would seem to provide a natural and richly varied domain in which to target benefit from IT solutions. But history shows that it is one of the most difficult domains in which to bring them to fruition. This paper provides an overview of the changing context and information requirements of healthcare that help to explain these characteristics.First and foremost, the disciplines and professions that healthcare encompasses have immense complexity and diversity to deal with, in structuring knowledge about what medicine and healthcare are, how they function, and what differentiates good practice and good performance. The need to maintain macro-economic stability of the health service, faced with this and many other uncertainties, means that management bottom lines predominate over choices and decisions that have to be made within everyday individual patient services. Individual practice and care, the bedrock of healthcare, is, for this and other reasons, more and more subject to professional and managerial control and regulation.One characteristic of organisations shown to be good at making effective use of IT is their capacity to devolve decisions within the organisation to where they can be best made, for the purpose of meeting their customers' needs. IT should, in this context, contribute as an enabler and not as an enforcer of good information services. The information infrastructure must work effectively, both top down and bottom up, to accommodate these countervailing pressures. This issue is explored in the context of infrastructure to support electronic health records.Because of the diverse and changing requirements of the huge healthcare sector, and the need to sustain health records over many decades, standardised systems must concentrate on doing the easier things well and as simply as possible, while accommodating immense diversity of requirements and practice. The manner in which the healthcare information infrastructure can be formulated and implemented to meet useful practical goals is explored, in the context of two case studies of research in CHIME at UCL and their user communities.Healthcare has severe problems both as a provider of information and as a purchaser of information systems. This has an impact on both its customer and its supplier relationships. Healthcare needs to become a better purchaser, more aware and realistic about what technology can and cannot do and where research is needed. Industry needs a greater awareness of the complexity of the healthcare domain, and the subtle ways in which information is part of the basic contract between healthcare professionals and patients, and the trust and understanding that must exist between them. It is an ideal domain for deeper collaboration between academic institutions and industry

Examining the Content of Mental Health Intake Assessments From a Biopsychosocial Perspective

Psychotherapists’ approach to intake assessment has a major impact on mental health case conceptualization and treatment. Despite the importance of this issue, very little is known about the actual intake assessment practices of therapists providing mental health care in the community. This appears to be the first study that has investigated which aspects of biological, psychological, and sociocultural functioning are documented by therapists in their client intake assessments, how thoroughly these issues are assessed, and how well the information collected is then integrated into the assessment findings and case conceptualization. The examination of 163 client files from 3 mental health clinics found that therapists were regularly collecting client information regarding a wide range of biopsychosocial issues, though not in a detailed or comprehensive manner. There was also little evidence that the information was being integrated in a manner designed to maximize treatment effectiveness. These findings have major implications for training and practice in mental health assessment

Embracing Accountability: Physician Leadership, Public Reporting, and Teamwork in the Wisconsin Collaborative for Healthcare Quality

Based on interviews, presents a case study of how a "bottom-up" physician-led group of healthcare providers realized voluntary public reporting of comparative performance information as a quality improvement tool. Shares requirements and lessons learned

Pick-n-mix approaches to technology supply : XML as a standard “glue” linking universalised locals

We report on our experiences in a participatory design project to develop ICTs in a hospital ward working with deliberate self-harm patients. This project involves the creation and constant re-creation of sociotechnical ensembles in which XML-related technologies may come to play vital roles. The importance of these technologies arises from the aim underlying the project of creating systems that are shaped in locally meaningful ways but reach beyond their immediate context to gain wider importance. We argue that XML is well placed to play the role of "glue" that binds multiple such systems together. We analyse the implications of localised systems development for technology supply and argue that inscriptions that are evident in XML-related standards are and will be very important for the uptake of XML technologies

Bottom-Up Modeling of Permissions to Reuse Residual Clinical Biospecimens and Health Data

Consent forms serve as evidence of permissions granted by patients for clinical procedures. As the recognized value of biospecimens and health data increases, many clinical consent forms also seek permission from patients or their legally authorized representative to reuse residual clinical biospecimens and health data for secondary purposes, such as research. Such permissions are also granted by the government, which regulates how residual clinical biospecimens may be reused with or without consent. There is a need for increasingly capable information systems to facilitate discovery, access, and responsible reuse of residual clinical biospecimens and health data in accordance with these permissions. Semantic web technologies, especially ontologies, hold great promise as infrastructure for scalable, semantically interoperable approaches in healthcare and research. While there are many published ontologies for the biomedical domain, there is not yet ontological representation of the permissions relevant for reuse of residual clinical biospecimens and health data. The Informed Consent Ontology (ICO), originally designed for representing consent in research procedures, may already contain core classes necessary for representing clinical consent processes. However, formal evaluation is needed to make this determination and to extend the ontology to cover the new domain. This dissertation focuses on identifying the necessary information required for facilitating responsible reuse of residual clinical biospecimens and health data, and evaluating its representation within ICO. The questions guiding these studies include: 1. What is the necessary information regarding permissions for facilitating responsible reuse of residual clinical biospecimens and health data? 2. How well does the Informed Consent Ontology represent the identified information regarding permissions and obligations for reuse of residual clinical biospecimens and health data? We performed three sequential studies to answer these questions. First, we conducted a scoping review to identify regulations and norms that bear authority or give guidance over reuse of residual clinical biospecimens and health data in the US, the permissions by which reuse of residual clinical biospecimens and health data may occur, and key issues that must be considered when interpreting these regulations and norms. Second, we developed and tested an annotation scheme to identify permissions within clinical consent forms. Lastly, we used these findings as source data for bottom-up modelling and evaluation of ICO for representation of this new domain. We found considerable overlap in classes already in ICO and those necessary for representing permissions to reuse residual clinical biospecimens and health data. However, we also identified more than fifty classes that should be added to or imported into ICO. These efforts provide a foundation for comprehensively representing permissions to reuse residual clinical biospecimens and health data. Such representation fills a critical gap for developing applications which safeguard biospecimen resources and enable querying based on their permissions for use. By modeling information about permissions in an ontology, the heterogeneity of these permissions at a range of levels (e.g., federal regulations, consent forms) can be richly represented using entity-relationship links and embedded rules of inference and inheritance. Furthermore, by developing this content in ICO, missing content will be added to the Open Biological and Biomedical Ontology (OBO) Foundry, enabling use alongside other widely adopted ontologies and providing a valuable resource for biospecimen and information management. These methods may also serve as a model for domain experts to interact with ontology development communities to improve ontologies and address gaps which hinder successful uptake.PHDNursingUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/162937/1/eliewolf_1.pd

From theory to 'measurement' in complex interventions: methodological lessons from the development of an e-health normalisation instrument

<b>Background</b> Although empirical and theoretical understanding of processes of implementation in health care is advancing, translation of theory into structured measures that capture the complex interplay between interventions, individuals and context remain limited. This paper aimed to (1) describe the process and outcome of a project to develop a theory-based instrument for measuring implementation processes relating to e-health interventions; and (2) identify key issues and methodological challenges for advancing work in this field.<p></p> <b>Methods</b> A 30-item instrument (Technology Adoption Readiness Scale (TARS)) for measuring normalisation processes in the context of e-health service interventions was developed on the basis on Normalization Process Theory (NPT). NPT focuses on how new practices become routinely embedded within social contexts. The instrument was pre-tested in two health care settings in which e-health (electronic facilitation of healthcare decision-making and practice) was used by health care professionals.<p></p> <b>Results</b> The developed instrument was pre-tested in two professional samples (N = 46; N = 231). Ratings of items representing normalisation 'processes' were significantly related to staff members' perceptions of whether or not e-health had become 'routine'. Key methodological challenges are discussed in relation to: translating multi-component theoretical constructs into simple questions; developing and choosing appropriate outcome measures; conducting multiple-stakeholder assessments; instrument and question framing; and more general issues for instrument development in practice contexts.<p></p> <b>Conclusions</b> To develop theory-derived measures of implementation process for progressing research in this field, four key recommendations are made relating to (1) greater attention to underlying theoretical assumptions and extent of translation work required; (2) the need for appropriate but flexible approaches to outcomes measurement; (3) representation of multiple perspectives and collaborative nature of work; and (4) emphasis on generic measurement approaches that can be flexibly tailored to particular contexts of study

CausaLM: Causal Model Explanation Through Counterfactual Language Models

Understanding predictions made by deep neural networks is notoriously difficult, but also crucial to their dissemination. As all ML-based methods, they are as good as their training data, and can also capture unwanted biases. While there are tools that can help understand whether such biases exist, they do not distinguish between correlation and causation, and might be ill-suited for text-based models and for reasoning about high level language concepts. A key problem of estimating the causal effect of a concept of interest on a given model is that this estimation requires the generation of counterfactual examples, which is challenging with existing generation technology. To bridge that gap, we propose CausaLM, a framework for producing causal model explanations using counterfactual language representation models. Our approach is based on fine-tuning of deep contextualized embedding models with auxiliary adversarial tasks derived from the causal graph of the problem. Concretely, we show that by carefully choosing auxiliary adversarial pre-training tasks, language representation models such as BERT can effectively learn a counterfactual representation for a given concept of interest, and be used to estimate its true causal effect on model performance. A byproduct of our method is a language representation model that is unaffected by the tested concept, which can be useful in mitigating unwanted bias ingrained in the data.Comment: Our code and data are available at: https://amirfeder.github.io/CausaLM/ Under review for the Computational Linguistics journa

How Mental Health and Welfare to Work Interact: The Role of Hope, Sanctions, Engagement, and Support

[Excerpt] This article describes some of the lessons learned in the implementation of the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) as it relates to people with psychiatric disabilities. It attempts to articulate some of the inherent difficulties faced in serving these individuals within the welfare system as well as how the established strengths of each system can inform the other’s efforts. The philosophy concerning work for clients of the welfare and mental health systems differ. Each system has developed separately, and they do not easily integrate their differing philosophies and goals. At the client level, this lack of consistency presents obvious coordination barriers. At the system level, examination of practice and the underlying philosophy of each provides incentives for cross-training and policy changes. Two case studies describe the identification of issues, opportunities, and challenges to providing Temporary Assistance for Needy Families (TANF) services to individuals with mental illness. These lessons can provide guidance to mental health systems as they strive to implement evidence-based employment practices and provide welfare entities with policy direction as a result of a widening knowledge base. Specific policy and program innovations in a county and in a state are highlighted to demonstrate these issues. Finally, the authors raise areas for further inquiry and reflection