Laura Slaughter

Toward a framework for understanding lay public's comprehension of disaster and bioterrorism information

In the last decade, we have witnessed a significant increase in disaster preparedness and crisis communication efforts. This stands in sharp contrast with paucity of research that deals with the publics comprehension of disaster information and related decision-making. The objective of this paper is to outline a theoretical and methodological framework for research on lay comprehension of crisis information. The proposed framework integrates two bodies of research: (1) cognitive science literature on comprehension and decision-making and (2) studies of the effects of anxiety on performance. The paper reviews selected works and methods from both fields, discussing how cognitive perspective could be extended to include emotional factors. We also discuss how further research integrating the proposed framework with public health communication perspective could: (1) provide insights for developing effective disaster communication and (2) inform the development of technological support for disaster communication and for education of lay people and health professionals.

Enabling Living Systematic Reviews and Clinical Guidelines through Semantic Technologies

In clinical medicine, secondary research that produces systematic reviews and clinical practice guidelines is key to sound decision-making and quality care. Having machine-readable primary study publications, namely the methods and results of published human clinical trials can greatly improve the process of summarizing and synthesizing knowledge in medicine. In this short introduction to the problem, we provide a brief review of the related literature on various efforts to produce semantic technologies for sharing and reusing content from clinical investigations (RCTs and other clinical primary studies). Using an illustrative case, we outline some of the necessary metadata that needs to be captured in order to achieve some initial automation in authorship of systematic reviews and clinical guidelines. In addition, we list desiderata that we believe are needed to reduce the time and costs of maintaining these documents. These include linking provenance information to a much longer scientific investigation lifecycle, one that incorporates a single studys role all the way through its use in clinical guideline recommendations for patient treatments.

Towards an Ontology of Document Acts: Introducing a Document Act Template for Healthcare

Background: In current information systems the pervasive role of documents and their ability of creating new entities are often overlooked. Regularly, documents are stored as mere files without analysis of their deontic powers. In order to make intelligent management of documents a real possibili- ty, we propose an ontological representation of document acts. Objectives: This article summarizes first steps towards a sound ontological representation of documents in healthcare organizations by providing a template structure for documents acts. Methods: We rely on the theory of document acts to develop such a template for defining pragmatic aspects of documents and to provide ex- amples of the application in healthcare procedures. Furthermore, we show how this research contributes for the development of an OWL representation of document acts. Results: We provide a template for document acts and show its usage in clinical guidelines. Conclusion: While the definition of pragmatic aspects contributes to a clearer representation of documents acts in the health- care domain, further development needs to be carried out regarding representation of document acts in ontologies.

Visual query interfaces for semantic datasets

The rapid growth of the Linked Open Data cloud, as well as the increasing ability to lift relational enterprise datasets to a semantic, ontology-based level means that vast amounts of information are now available in a representation that closely matches the conceptualizations of the potential users of this information. This makes it interesting to create ontology based, user-oriented tools for searching and exploring this data. Although initial efforts were intended for tech users with knowledge of SPARQL/RDF, there are ongoing proposals designed for lay users. One of the most promising approaches is to use visual query interfaces, but more user studies are needed to assess their effectiveness. In this paper, we compare the effect on usability of two important paradigms for ontology-based query interfaces: form-based and graph-based interfaces. In order to reduce the number of variables affecting the comparison, we performed a user study with two state-of-the-art query tools developed by ourselves, sharing a large part of the code base: the graph-based tool OptiqueVQS*, and the form-based tool PepeSearch. We evaluated these tools in a formal comparison study with 15 participants searching a Linked Open Data version of the Norwegian Company Registry. Participants had to respond to 6 non-trivial search tasks using alternately OptiqueVQS* and PepeSearch. Even without previous training, retrieval performance and user confidence were very high, thus suggesting that both interface designs are effective for searching RDF datasets. Expert searchers had a clear preference for the graph-based interface, and mainstream searchers obtained better performance and confidence with the form-based interface. While a number of participants spontaneously praised the capability of the graph interface for composing complex queries, our results evidence that graph interfaces are difficult to grasp. In contrast, form interfaces are more learnable and relieve problems with disorientation for mainstream users. We have also observed positive results introducing faceted search and dynamic term suggestion in semantic search interfaces.

Why do people want a paper copy of their electronic patient record

Changes have recently been passed in the Norwegian legislation, allowing for more exchange of patient information between health personnel. These legal changes came as a result of a long and still ongoing debate concerning the potential conflict between confidentiality issues and patient safety as health care is getting more fragmented. At the same time, an increasing number of patients now make use of their legal right to access their patient record. In this paper, we shed light on some of the reasons why patients request a copy of their record. We report the preliminary results from an interview study in which seventeen patients who have asked for a copy of their patient record following a hospital stay have been interviewed. In our interview study, securing transmission of information between health care workers is one of the main reasons for requesting a copy of the record. We will discuss how this finding might contribute to the ongoing debate.

Collecting health related text from patient health writings

The Internet has been a huge resource for sharing and collecting information including health related information. Some health related information is written by patients (lay persons) discussing their experience about health problems and treatments. This paper introduces our initial work on providing physicians with clinically useful patient health writings. More specifically, the paper presented our experiments, as a part of the whole research work, on filtering health related text from patient health writings. We focused on selecting possible feature for classifying text from breast cancer mailing list into health and non health related text. Using KNN classification method, we experimented with various features, i.e. all terms, all terms except most frequently used terms, UMLS terms, health related UMLS terms, and health related UMLS semantic types. The experiments showed that UMLS terms extracted from the text is a good feature, compared to the other features.

PepeSearch: Easy to Use and Easy to Install Semantic Data Search

Despite the increasing availability of RDF datasets, searching and browsing semantic data is still a daunting task for mainstream users. With PepeSearch, it is easy to query an arbitrary triple store without previous knowledge of RDF/SPARQL. PepeSearch offers a form-based interface with simple and intuitive elements such as drop-down menus or sliders that are automatically mapped from the ontological structures of the target dataset. In this demonstration we will show how to set up a PepeSearch instance, how to formulate queries and how to retrieve results.

An Assessment of the Potential for Personalization in Patient Decision Aids

An increasing number ofpatient decision aids are being developed to assist patients in making personalized choices among health care options, but little is known about the current use of and potential for personalization of web-based decision aids. The purpose of this study is to estimate the potential for personalization of patient decision aids. We developed a coding scheme for personalization and analyzed web-based patient decision aids from all relevant developers according to the scheme. The most relevant subgroups of users and the current representation of the groups in the tools were identified. We then identified system behavior relevant to web personalization, and instances of adaptive system behaviors.The decision aids included in this study exhibit four out of five classes of system behavior eligible for personalization. With few exceptions, the tools do not contain automatic, adaptive behavior. Patient decision aids hold potential for web personalization. Relevant techniques are largely unexplored.

Patient Empowerment by Ontology-Based Multi-lingual Systems

Informing patients directly about their treat- ments and care is a crucial aspect of patient empowerment. The idea of using automated eHealth solutions to empower patients through better information services has been ex- plored. This is a difficult task even within a same language system but it grows even more complicated against the back- ground of increasing mobility within Europe. In effect, that means that patients are moving between different healthcare systems that are possibly based on different languages, and most likely using different coding systems. Taking into account such a multi-lingual scenario, the implementation of formal ontology-based information systems provide a number of ad- vantages to overcome communication obstacles. In this paper we describe techniques already in use for clinical research and point out strategies to overcome existing problems regarding the cross-border communication of medical documentation and information.