CODATA logo
CODATA 2002: Frontiers of
Scientific and Technical Data

Montréal, Canada — 29 September - 3 October
 

Medical and Health Data Abstracts

Proceedings
Table of Contents

Keynote Speakers

Invited Cross-Cutting Themes

CODATA 2015

Physical Science Data

Biological Science Data

Earth and Environmental Data

Medical and Health Data

Behavioral and Social Science Data

Informatics and Technology

Data Science

Data Policy

Technical Demonstrations

Large Data Projects

Poster Sessions

Public Lectures

Program at a Glance

Detailed Program

List of Participants
[PDF File]

(To view PDF files, you must have Adobe Acrobat Reader.
)

Conference Sponsors

About the CODATA 2002 Conference

 


Track I-D-2:
The US National Library of Medicine's Visible Human Project® Data Sets


Chair: Michael J. Ackerman, National Library of Medicine, National Institutes of Health, USA

In the mid-1990s, the US National Library of Medicine sponsored the acquisition and development of the Visible Human Project® database. This image database contains anatomical cross-sectional images, which allow the reconstruction of three-dimensional male and female anatomy to an accuracy of less than 1.0 mm. The male anatomy is contained in a 15 gigabyte database, the female in a 40 gigabyte database.

This session will consist of four papers. The first will summarize the history of the Visible Human Project® and the development of the Visible Human data sets. We will then explore the problems encountered in the real-time navigation of such large image databases. The third paper will discuss the extraction of data from such a database, and the final paper will cover the problems of validation.

1. The Visible Human Project® Image Data Sets
From Inception to Completion and Beyond

Richard A. Banvard, National Library of Medicine, National Institutes of Health, USA

The Visible Human Project® Data Sets resulted from a recommendation of the National Library of Medicine (NLM) Board of Regents' 1987 Long Range Plan that stated the NLM should "thoroughly and systematically investigate the technical requirements and feasibility of instituting a biomedical images library." At the suggestion of an expert panel convened by the Board and reporting in April 1990 that - "NLM should undertake a first project, building a digital image library of volumetric data representing a complete normal adult human male and female. This 'Visible Human' project would include digital images derived from computerized tomography, magnetic resonance imaging, and photographic images from cryosectioning of cadavers." - the University of Colorado was contracted in August 1991 by NLM to undertake collection of this "Visible Human" image data set. In November 1994 the Visible Human Male data set was announced and released to the public, followed one year later by the Visible Human Female. The data sets are available via FTP at no cost, to anyone holding a no cost license. Each image: CT, MRI and cryosection is stored as a separate file; can be downloaded singularly or in any number up to the entire data set. Several mirror sites have been established to facilitate download for international license holders. The images also can be purchased on tape for a fee from the National Technical Information Services (NTIS). This session will include a discussion of the genesis of the Visible Human Project®, a description of the University of Colorado's cryosectioning procedures, and descriptions of several of the more interesting and notable outcomes developed by license holders who have used The Visible Human Project® Data Sets.



2. Visible Human Explorer
Hao Le, Flashback Imaging Inc., Canada
Brian Wannamaker, Sea Scan International Inc., Canada

The technology for imaging in medical applications continues apace. This increases the potential for improvements in medical research, diagnostic procedures, and patient care. On the other hand, the increase in imaging activity also increases the shear volume of data that must be dealt with. The imagery may be reviewed for immediate diagnostic procedures and discarded. Or it may be stored or archived for further use. However, storage or archiving is effectively discarding unless effective means for recovering the data exist. Accessibility is an essential component of developing and distributing new knowledge from growing data volumes. This paper will discuss specific approaches to improving accessibility of large image databases like that of the Visible Human Project. Real time navigation in 2D and 3D of image databases as well as user interfaces designed for public and academic use will be outlined. The presentation will be illustrated with some thousands of images from the Visible Human Project.



3. The NLM Insight Registration and Segmentation Toolkit
William Lorensen, GE Research, USA

In 1999, the National Library of Medicine (NLM) awarded six contracts to develop a registration and segmentation toolkit. The overall objective of the project is to produce an application programming interface (API) implemented within a public domain toolkit. The NLM Segmentation and Registration Toolkit supports image analysis research in segmentation, classification and deformable registration of medical images. This toolkit meets the following critical technical requirements identified by the National Library of Medicine:

  • Work with the Visual Human Male and Female data sets.
  • Provide a foundation for future medical image understanding research.
  • Become a self sustaining code development effort.
  • Accommodate periodic and incremental modifications and additions.
  • Accommodate expansion to parallel implementations.
  • Accommodate large memory requirements.
  • Support a variety of visualization and/or rendering platforms.

In addition to the technical challenges presented by these requirements, the selected team and subcontractors, had to work as a distributed group. The software development experience of the groups also varied. Some members had created software for a large community while others had only developed software for their local groups. The team defined a web centric software development process modeled after the Extreme Programming approach that relies on rapid and parallel requirements analysis, design, coding and testing. Communication through web based mailing lists and bug trackers was supplemented with conventional telephone conferences.

The first public version of the software is scheduled for release in October, 2002.

This talk discusses the chronology of the project, the core architecture and algorithms as well as the light weight software engineering processes used throughout the project. Finally, we present lessons learned that will be of value to future distributed software development projects.

 

4. The Visible Human Data Sets: A Protoype and a Roadmap for Navigating Medical Imaging Data
Peter Ratiu, Harvard Medical School, Brigham and Women's Hospital, USA

The Visible Human Data Sets are to date the most complete, multi-modality data sets of human anatomy. The computational challenges posed have been widely discussed and many of them have been or are being solved by experts in various aspects of medical image analysis and medical informatics. Their approach, which has proved profitable, is to regard the Visible Human as a vast collection of bits, single and multi-channell images, with little regard to its intrinsic content B human anatomy. This approach allowed them to solve computational problems that had appeared overwhelming at the inception of the project: powerful servers can make available the individual images, manipulate and display them in various ways, on the desktop of end-users. An example of such solution implemented by computer scientists is the EPFL Server.

The more specific problem, of how to use this unique information in medical research has been less often addressed. One reason for this, is that the data is vast, its manipulation seemingly unwieldy for anatomists, until now more versed in using scalpels than mouse buttons. Another reason is, the inherent novelty of the data: for the first time, it opens the possibility of a quantitative approach to anatomy. However, this quantitative approach can be best exploited by first defining problems in anatomy, anthropology, pathology in these terms.

I will discuss two basic aspects of the Visible Human Project as a landmark data set:

  1. The problem of establishing a universal anatomical coordinate system, with applications in basic research as well as clinical medicine (radiology, clinical imaging), and how the VHP can contribute to the solution.
  2. The need for a quantitative comparative anatomy, as this is becoming apparent in a broad array of disciplines, ranging from physical anthropology to gynecology. I will present how the VHP data can be employed as a roadmap for navigating diverse data.

The aim of this presentation is to present the problems related to medical imaging data to experts in other fileds, in such manner, that it may spark a mutually profitable dialog with hitherto alien disciplines.



Track III-C-5:
Emerging tools and techniques for data handling in developing countries

Chair: Julia Royall, Chief, International Programs, and Director, Malaria Research Telecommunications Network, for the National Library of Medicine, USA

This session will feature three panelists, all working with various tools and information technology to manage data to improve health in Africa.

Allen Hightower is Chief, Data Management Activity at CDC’s National Center for Infectious Disease and a pioneer in initiating NLM’s malaria research network at a remote site on Lake Victoria in Kenya.  He has developed several tools for data collection and management which will change the speed and quality of data collection in Africa.

From the KEMRI-Wellcome Trust research unit on the coast of Kenya comes Tom Oluoch, systems operator/data manager and co-creator of a virtual library for this site, which brings together researchers from Kenya Medical Research Institute and Oxford University.  His eyewitness case study is full of concrete examples of how IT and data management have brought expansion and change to this remote research unit.

Bob Mayes is Chief, Health Informatics Section, Zimbabwe CDC AIDS Program.  CDC’s program of technical assistance to Zimbabwe focuses on strengthening surveillance and laboratory measures, scaling up promising prevention and care strategies, supporting behavior change communication projects, data mining, semantic management of data for systematic review, and promoting technology transfer.

The presenters will discuss individual examples and case studies, as well as talk about how these tools can facilitate the discovery process.

1. Field Data Collection for the Malaria Research Network in Kenya
Allen Hightower, Centers for Disease Control, USA

Allen Hightower is Chief, Data Management Activity at CDC's National Center for Infectious Disease and a pioneer in initiating NLM's malaria research network at a remote site on Lake Victoria in Kenya. He has developed several tools for data collection and management which will change the speed and quality of data collection in Africa. He is currently evaluating field data collection using paperless GPS/data collection systems via Pocket PC-based personal data assistants in two projects:

(1) collecting census and GPS data for a wash-durable bednet study area and
(2) conducting a survey in a 15 village area on bednet usage for linkage with other health-related data.


2. Eye witness account: the role of IT and data management in expansion and change at a remote research unit in Kenya
Tom Oluoch, KEMRI-Wellcome Trust, Kenya

From the KEMRI-Wellcome Trust research unit on the coast of Kenya comes Tom Oluoch, systems operator/data manager and co-creator of a virtual library for this site, which brings together researchers from Kenya Medical Research Institute and Oxford University. His eyewitness case study is full of concrete examples of how IT and data management have brought expansion and change to this remote research unit.


3. CDC in Zimbabwe: strengthening regional surveillance and laboratory measures, supporting infrastructure development and promoting technology transfer
Robert Mayes, CDC AIDS Program, Zimbabwe

Bob Mayes is Chief, Health Informatics Section, Zimbabwe CDC AIDS Program. CDC's program of technical assistance to Zimbabwe focuses on strengthening surveillance and laboratory measures, scaling up promising prevention and care strategies, supporting behavior change communication projects, data mining, semantic management of data for systematic review, and promoting technology transfer.

 

4. Complex Data From Health Research
Themba Mohoto, Reproductive Research Unit, Chris Hani Baragwanath Hospital, Oweto

In the continuing search for better health for all, health researchers are faced with numerous methodological problems of a complex nature in their efforts to strengthen health programs, evaluate health systems and measure the impact of interventions. This in turn has posed greater challenges for data analysts.

This paper investigates the types of data produced in health research including:

  1. Multi-stage survey data, e.g. Demographic Health Survey (DHS) in which data is collected at many levels such as household data, women data and children data and there is a need to link the data from these various levels.
  2. Longitudinal or Repeated measures studies. Such data can arise either from cohort studies or from clinical trials. In this type of study there are repeated observations within individuals.
  3. In clinical trial databases there are also difficulties with recording adverse events or concomitant medications, as there will be a variable number of these per patient.
  4. A new area is that of cluster randomized trials which combines features of multistage sample data with features of clinical trial data.

Statisticians in this area are investigating ways of dealing with these problems.

 


Track III-D-6:
Données & Santé : utilisations et enjeux
(Data and Health: Usage and Issues
)

Chair: Daniel Laurent, Université MLV, France ; Jean-Pierre Caliste UTC, France

Le poids du secteur de la Santé dans l'économie mondiale est devenu déterminant. Les dépenses pour la Santé représentent désormais 15% du PIB des Etats-Unis et 10% de celui de la France ou du Canada. Internet a bouleversé le domaine et accentué son ouverture au grand public en termes d'informations : il existe plus de 17 000 sites totalement dédiés à la santé et 40% des interrogations des internautes américains concernent des sites santé.

La diversité des situations médicales reposant sur l'utilisation de données complexes correspond a des angles d'approches variés : objectifs institutionnels et politiques, circulation d'informations médicales dans les réseaux spécialisés et par le biais d'internet, nouvelles pratiques médicales et assistance pour des sites isolés, évolution des services médicaux pour le praticien et le patient.

On constate une importance croissante des relations entre les composantes étatiques (systèmes de Sécurité sociale) et privées (assureurs, laboratoires pharmaceutiques…) tant au plan organisationnel (niveau de définition des actes) qu'à celui des aspects micro et macroéconomiques.

L'utilisation de données complexes (numériques, imagerie …) et la gestion des connaissances fait appel aux techniques de traitement de données de nature hétérogène en s'appuyant sur des approches résolument pluridisciplinaires venant conforter la théorie de l'information.

A partir de ces constatations, Codata France a fait du domaine de la santé l'un de ses trois axes prioritaires d'activité. Il propose d'organiser un atelier thématique sur cette question. Si nécessaire, il pourrait être réparti en 2 sessions spécialisées. Pourraient y être présentées les thématiques suivantes :

  • les réseaux d'information ou les " autoroutes " de l'information en santé.
  • données et internet (e health) : fiabilité, validité…
  • les réseaux de santé et les réseaux coordonnés de soins : de nouveaux enjeux pour le " managed care "
  • les systèmes d'information en santé : réseaux nationaux ou régionaux, réseaux d'établissements, réseaux de santé, cabinet médical…
  • les enjeux de la télémédecine
  • l'utilisation des données par centres d'appels (" call centers ")
  • le dossier médical du patient
  • la qualité des données
  • la protection et l'archivage des données
  • le confidentialité des données
  • l'intéropérabilité des données et des systèmes

 

1. New information systems for the public healthcare insurance organization : the Catalan Health Service (CatSalut) in Spain
TORT I BARDOLET (Jaume), Generalitat de Catalunya, CatSalut, Barcelona, Spain

Key words : information systems, health care organisation, insurance, risk management, data.
Mots clés : systèmes d'information, management des systèmes de santé, gestion du risque, données.

Ten years after its creation, the Catalan Health Service (SCS) is initiating a reorientation process aimed at consolidating its role as the public healthcare insurance organization for all citizens of Catalonia. This reorientation involves generating a series of actions oriented more towards attention to the insurance holder/citizen, while maintaining a close relation with the suppliers of healthcare services from the public network.

This transformation coincides with the intention of generating qualitative and quantitative advancement regarding the structure of information systems available up to now. Thus a new Systems Plan is being drawn up, oriented towards the SCS's function as a public healthcare insurance organization.

1. Definition of the SCS's management needs

Aims:
1.1 To manage resources efficiently
1.2 To implant processes for continued improvement in service quality
1.3 To bring about active client management
1.4 To manage risk
1.5 To implant efficient administrative processes

These aims involve a series of needs that must be taken into account when developing new management and information systems.

  • To back the management aims of the major working areas: demand, offer and internal administration, and lines of action for each of these (services).
  • To facilitate the systematic drawing up of management reports based on parameters enabling the executive structure to make decisions concerning steps to be taken.
  • To collect all necessary information properly and in good time by means of the most adequate software.

In order to specify these aims, a series of management levers has been devised:

To manage resources
To provide activity follow-up
To provide cost follow-up
To manage the quality level
To establish communication with clients
To manage risk
To improve the health of the population
To rationalize processes
To improve claim procedure for damages

Moreover, this has to be specified using pre-established follow-up parameters for drawing up the management reports.

2. Evaluating the developments and structure required

The proposal for the basic structure of the new information systems is based on three concepts and their corresponding identifiers:

- The insurance holder = personal identification code (CIP)
- The service providing unit = productive unit code (UP)
- The service / activity = service code

It has been planned that the different computer applications will work on a large data warehouse that will compile all activity (contracts of insurance holders with the productive structure) and which must make possible the generation of different views for each of the functions (see Graph 1).

The system has been graphically represented as a pyramid divided transversally into three parts. The lower trapezium shows the database (information) ; the middle, the computer applications (the treatment of information); and the upper triangle, the management information system.

The design of the information system is structured around four basic areas: demand, offer, activity and economy-finance (see Graph 2).

 

2. The planning and management of emergency treatment in Catalonia, by means of a specific information system
TORT I BARDOLET (Jaume), Generalitat de Catalunya, CatSalut, Barcelona, Spain

Key words : information systems, emergency, health care organisation, planning, data.
Mots clés : systèmes d'information, urgences, management des systèmes de santé, planification, données.

The Overall Emergency Plan has been used in Catalonia for the past three years. This is a global scheme that includes planning, precaution and prevention, management and supervision of emergency healthcare attention. It was created, above all, for those times of the year when there is an increased demand for healthcare attention for a variety of reasons.

The Plan includes:

  • The analysis of the population requiring emergency attention: user characteristics, reasons for the examination, analysis of user expectations and motivations.
  • Preventative actions: increased homecare coverage, increased influenza vaccine coverage, follow-up of users who have repeatedly requested emergency attention.
  • Organizational actions: the drawing up by the hospitals of annual working plans for emergency attention, telephone-based back-up for mental health professionals, and coordination among healthcare mechanisms.
  • An increase in the offer of contracted hospital discharges, and reinforcements in the summer and during periods of sustained growth in demand.

The information system
The Overall Emergency Plan is based on a specific information system -extranet- which makes it possible for a group of productive units from different healthcare areas to register - on a daily basis - emergency activity data from their centers, as well as other relevant information that allows the forecasting of increased demand and the quick and effective adoption of corrective measures. The extranet includes information regarding:

  • Specialized attention (hospitals):
    • data concerning activity: emergency cases attended and admitted, hospital admissions, discharges and transfers to other centers
    • data concerning resource availability: patients awaiting admission, waiting period, available beds
  • Continued primary attention: emergency activity of these centers
  • Primary attention: data concerning continued attention, number of house calls
  • Specific emergency services (061): number of telephone calls attended and services carried out.

3. Etude d'un système d'aide à la gestion de l'information dans la santé
Appliqué au domaine cardiovasculaire
Elisabeth Scarbonchi, Daniel Laurent, Christian Recchia, Université de Marne-la-Vallée, Institut Francilien d'Ingénierie des Services (I.F.I.S.), France

Dans le cadre d'un réseau de soins, le praticien et l'usager ont accès à un ensemble d'informations le concernant. Les informations sont réparties dans différents services d'un même hôpital voir plusieurs établissements. Dans ce système intervient la nature (typologie des informations), leur localisation et les volumes concernés, notamment les données informatiques lorsqu'il s'agit d'imagerie médicale.

Les réseaux à haut débit sont de nature à offrir des possibilités de connexion entre ces différentes sources pour une exploitation optimales dans les services de cardiologie.

Lorsqu'il s'agit de données numériques et textuelles, les techniques de datamining et textmining pourront être utilisés dans le but de produire de l'information à valeur ajoutée dans le cadre d'un fonctionnement opérationnel voir dans un contexte de recherche.

Lorsqu'il s'agit de sources d'images leur mise à disposition immédiate et interactive offre des possibilités et des perspectives d'animation et représentation dans un contexte opérationnel.

La mise en place d'un système d'informations multisources en réseau nécessitera de traiter avec une attention particulière les problèmes de sécurité et de propriété de données.

 

4. Données et santé : propriété, accès, protection, transmission. Les enjeux des réseaux de santé
Christian Bourret, Université de Marne-la-Vallée, France
Serge Chambaud, Institut National de la Propriété Industrielle (I.N.P.I.), France
Elisabeth Scarbonchi, Université de Marne-la-Vallée, France
Daniel Laurent, Université de Marne-la-Vallée, France

Mots clés : propriété des données, confidentialité, dossier médical patient, réseaux de santé, autoroutes de l'information.
Key words : data ownership, confidentiality, medical record, business methods, patents, health care management, information networks.

La propriété et la protection des données constituent un des enjeux majeurs de la société post-industrielle fondée sur les biens immatériels : les services et la diffusion de l'information. Dans le contexte du développement de l'industrie de l'information, les données médicales constituent un enjeu commercial très important. Ces données sont très spécifiques. Il s'agit avant tout de données personnelles, sensibles et confidentielles, faisant l'objet de législations particulières. Pour bâtir notre problématique, nous nous appuierons sur l'expérience française des réseaux de santé, que nous élargirons ensuite à des comparaisons avec les Etats-Unis.

Le premier enjeu étudié sera celui de la propriété et de l'usage des données produites par les réseaux de santé. Nous l'analyserons à partir du dossier médical patient. Les données qu'il renferme appartiennent-elles au patient ? Aux différents médecins et aux organisations (hôpitaux, cliniques, assurance maladie …) pris individuellement ? Au réseau ? A l'entité qui l'héberge : notaire de l'information, infomédiaire ou hébergeur ? La réponse est loin d'être évidente. L'ensemble des données : le dossier global partagé, constitue-t-il en termes de propriété un tout différent de la somme de ses parties ? Peut-on vraiment strictement séparer l'usage des données de leur propriété ? Nous analyserons les différentes réponses actuelles possibles à ces questions.

Nous évoquerons ensuite une autre question déterminante : l'accès du patient à la consultation de ses données de santé personnelles. En France, la nouvelle loi du 4 mars 2002 a posé de grands principes mais a laissé de nombreuses interrogations en suspens. Cet accès se fera-t-il directement ? Indirectement par le biais d'un médecin ? Et à quelles données le patient aura-t- il accès ? A l'intégralité de son dossier ou à un résumé ? Aura-t-il également accès aux commentaires des praticiens ? Nous tracerons des pistes de réflexion pour éclairer toutes ces questions.

Tout se complique encore quand, comme c'est largement le cas aux Etats-Unis, les patients constituent leur propre dossier médical. Dans ce cas, quelle en est la fiabilité ? Peut-il être utilisé par des professionnels qui engageraient ainsi leur responsabilité ?

En terme de propriété industrielle et intellectuelle, se pose aussi la question de la brevetabilité et de la protection des logiciels de création, de gestion ou de diffusion du dossier médical patient. Les dossiers médicaux patients sont-ils protégeables ? Les critères de brevetabilité classiques s'appliquent-ils ou non à eux ? Ou bien, constituent-ils des " business methods " et, dans ce cas, comment les protéger ? Les réponses peuvent varier selon les pays. Nous aborderons ces questions à travers une comparaison entre les possibilités offertes en France et aux Etats-Unis.

La transmission des données médicales constitue un autre enjeu majeur, celui des autoroutes de l'information. Nous examinerons deux aspects essentiels de l'évolution actuelle, notamment en France : l'effacement progressif de l'Etat au profit d'acteurs privés et le choix fondamental entre la sécurisation d'un réseau de transmission de données médicales (Réseau Santé Social de Cégétel-Vivendi) ou de la sécurisation des données elles-mêmes (France Télécom ou Cegedim).

 

5. Les réseaux de santé : une expérimentation française centrée sur le partage de l'information
Gabriella Salzano, Université de Marne-la-Vallée, France
Christian Bourret, Université de Marne-la-Vallée, France
Jean-Pierre Caliste, Université de Technologie de Compiègne (UTC), France
Daniel Laurent, Université de Marne-la-Vallée, France

Mots clés : réseaux de santé, systèmes d'information, information partagée.
Key words : health care management, information systems, data, shared information.

Depuis le début des années 1980, l'ensemble des grands pays industrialisés sont confrontés au problème de la maîtrise des coûts de leurs systèmes de santé et en particulier de ceux de l'hospitalisation. Une solution envisagée a été le " virage ambulatoire " visant à privilégier la médecine de ville en s'appuyant sur les nouvelles technologies de l'information et de la communication (NTIC). En France, une voie originale a été expérimentée : les réseaux de santé. Elle a été légitimée par la loi du 4 mars 2002 relative au droit des malades et à la qualité du système de santé.

Les réseaux de santé se veulent résolument au service du patient. Leurs objectifs sont de décloisonner le système de santé en améliorant l'indispensable relation ville-hôpital mais aussi les relations entre les différents professionnels en charge du même patient. Il s'agit d'assurer la qualité et la continuité de soins par la mise en place d'une organisation innovante, fondée sur des valeurs partagées, comme la construction de pratiques collégiales et non plus individuelles ou hiérarchisées, et un meilleur partage de l'information.

Les systèmes d'information constituent le pivot des réseaux de santé. Ils doivent tout d'abord assurer l'interopérabilité (coordination et intégration) de différents autres sous-systèmes, notamment les systèmes d'information propres aux hôpitaux ou cliniques, les logiciels de gestion de cabinets médicaux ou des autres professionnels. Il doivent aussi permettre l'accès à des bases de données ou à des logiciels d'aides à la décision (référentiels …) comme aux services de télémédecine. Ils doivent aussi assurer la gestion de services spécifiques au réseau : plate-forme d'orientation des urgences et / ou centre d'appels, dossier patient partagé au sein du réseau … Nous analyserons les principaux problèmes à résoudre, en termes d'organisation et d'applications.

Les réseaux de santé répondent à des forts besoins de changement. Leur mise en place et leurs performances doivent être évaluées. L'évaluation influence fortement l'élaboration du système d'information, car celui-ci devra fournir les données indispensables au suivi des indicateurs d'évaluation et répondre à des exigences de qualité, spécifiques aux objectifs des réseaux.

Dans cette communication, nous évoquerons les enjeux et les méthodologies d'évaluation des réseaux de santé, en soulignant les interactions avec les méthodologies d'élaboration des systèmes d'information, dans un cadre de management de projets complexes.

 

Last site update: 15 March 2003