Synergy between medical informatics and bioinformatics: facilitating genomic medicine for future health care.

In this paper, we review the results of BIOINFOMED, a study funded by the European Commission (EC) with the purpose to analyse the different issues and challenges in the area where Medical Informatics and Bioinformatics meet. Traditionally, Medical Informatics has been focused on the intersection between computer science and clinical medicine, whereas Bioinformatics have been predominantly centered on the intersection between computer science and biological research. Although researchers from both areas have occasionally collaborated, their training, objectives and interests have been quite different. The results of the Human Genome and related projects have attracted the interest of many professionals, and introduced new challenges that will transform biomedical research and health care. A characteristic of the 'post genomic' era will be to correlate essential genotypic information with expressed phenotypic information. In this context, Biomedical Informatics (BMI) has emerged to describe the technology that brings both disciplines (BI and MI) together to support genomic medicine. In recognition of the dynamic nature of BMI, institutions such as the EC have launched several initiatives in support of a research agenda, including the BIOINFOMED study.

Internet health resources: from quality to trust.

OBJECTIVES: Quality of online health resources remains a much debated topic, despite considerable international efforts. The lack of a systematic and comprehensive conceptual analysis is hindering further progress. Therefore we aim at clarifying the origins, nature and interrelations of pertinent concepts. Further, we claim that quality is neither a necessary nor a sufficient condition for Internet health resources to produce an effect offline. As users' trust is also required, we examine the relation of quality aspects to trust building online. METHODS: We reviewed and analyzed the key documentation and deliverables of quality initiatives, as well as relevant scientific publications. Using the insights of philosophy, we identified the elementary dimensions which underlie the key concepts and theories presented so far in the context of online health information quality. We examined the interrelations of various perspectives and explored how trust as a phenomenon relates to these dimensions of quality. RESULTS: Various aspects associated with the quality of online health resources originate from four conceptual dimensions: epistemic, ethical, economic and technological. We propose a conceptual framework that incorporates all these perspectives. We argue that total quality exists only if all four dimensions have been addressed adequately and that high total quality is conducive to warranted trust. CONCLUSIONS: Quality and trust are intertwined, but distinct concepts, and their relation is not always straightforward. Ideally, trust should track quality. Apprehending the composition of these concepts will help to understand and guide the behavior of both users and providers of online information, as well as to foster warranted trust in online resources. The framework we propose provides a conceptual starting point for further deliberations and empirical work.

Towards personalized Internet health information: the STEPPS architecture.

PRIMARY OBJECTIVE: STEPPS (STructured Evaluated Personalized Patient Support) proposes a strategy for integration of electronic patient records with Internet health-related content and its consequent use in personalized information retrieval for patient education. The application domain is the post-discharge support of burn patients in the Netherlands. MATERIALS AND METHODS: We developed an electronic patient record interface for structured data collection in burn care. The system's thesaurus was projected to UMLS terms and the corresponding codes were incorporated in our software. A list of topics central to burn patient education was identified and a collection of related Web pages was compiled using meta-search software (Copernic2001Pro). The HTML pages were filed into catalogues by the Collexis indexing-matching software, using the UMLS Metathesaurus as indexing vocabulary. RESULTS: The bilingual (English and Dutch) structured data interface is currently used to create a database of retrospective patient data. Each patient's profile, i.e. set of characteristics employed to personalize information retrieval, can be automatically extracted. We have assembled a collection of more than 2500 Internet pages containing relevant information for burn patients. When patient data is available, the Collexis matching engine will accept the patient's profile as input and retrieve the most relevant HTML documents available in the catalogues. DISCUSSION: We have addressed some basic issues around the technical feasibility of linking electronic patient record data to online content. Although the functionality of STEPPS is not yet optimal, it contributes to the efforts towards improved relevance of information retrieval. Electronic patient record applications in conjunction with Internet resources can give a significant boost to the availability of tailored health education material. In this context, quality assurance of online health information is an indispensable element.

Structured physical examination data: a modeling challenge.

The success of systems facilitating collection of structured data by clinicians is largely dependent on the flexibility of the interface. The Open Record for CAre (ORCA) makes use of a generic model to support knowledge-based structured data entry for a variety of medical domains. An endeavor undertaken recently aimed to cover the broader area of Physical Examination by expanding the contents of the knowledge base. The model was found to be adequately expressive for supporting this task. Maintaining the balance between flexibility of the interface and constraints dictated by reliable retrieval, however, proved to be a considerable challenge. In this paper we illustrate through specific examples the effect of this trade off on the modeling process, together with the rationale for the chosen solutions and suggestions for future research focus.

Rx medication information for the public and the WWW: quality issues.

Misuse of prescription medications is a serious problem largely due to lack of information. Lay users are making use of resources available on the World Wide Web in order to bridge this information gap. It has already been noted though that health and medicine oriented sites present serious shortcomings with regard to quality and reliability of their content. In this review, checklists were used to determine to which extent the criteria suggested for quality evaluation of on-line health information are observed by sites offering information on Rx medications to the public. Also evaluated was the sites' comprehensiveness in coverage of important subject specific topics. The reviewed sites met inadequately the proposed quality criteria and presented significant variations in their coverage of the subject. Evaluation of information accuracy remains an unresolved problem in quality assessment, while techniques for automated review and retrieval are urgently needed. In the meantime, though, quality guidelines could prove more useful in getting valuable feedback from information providers and lay users alike, improving quality of information at its point of production.