August 24-25, 2006, Cologne, Germany
| International HL7 Interoperability Conference IHIC 2006
August 24-25, 2006, Cologne, Germany |
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To the IHIC 2006 conference program committee
Email: r.cornet@amc.uva.nl
Ronald Cornet, PhD
dept. of Medical Informatics, J1B-115
Academic Medical Center - Universiteit van Amsterdam
P.O.Box 22700
1100 DE Amsterdam
The Netherlands
r.cornet@amc.uva.nl
+31 (0)20 566 5188 (phone)
+31 (0)20 691 9840 (fax)
Ronald Cornet helds an MSc in physics (Delft University) and a PhD in Medical Informatics (University of Amsterdam).
He is an assistant professor at the dept of Medical Informatics at the Academic Medical Center in Amsterdam.
His educational activities involve participation in courses on Software Engineering and on Registration and Classification of patient information. Research focuses on knowledge representation in medicine, classification systems and vocabularies. Furthermore, he participates in the registry of the European Renal Association - European Dialysis & Transplant Association (ERA-EDTA).
Ronald Cornet is co-chair of the AMIA working group on Formal (Bio)Medical Knowledge Representation and member of the board of the Dutch Society for Health Care Informatics (VMBI). He is a member of the Dutch HL7 technical committees “Health & Clinical” and “Infrastructure & Messaging”.
Realizing a European research infrastructure in Nephrology with HL7 version 3
case study
20 minutes
The European Renal Association – European Dialysis and Transplant Association (ERA-EDTA) is broadening the set of data collected about patients on renal replacement therapy. HL7v3 will be used to exchange data between renal centers and regional / national registries, and between these registries and the European registry. Clinical experts have defined the data set, and definition of HL7v3 models and messages is in progress. In 5 countries, a pilot implementation will be realized to demonstrate feasibility of the approach.
Since 1964, the European Renal Association – European Dialysis and Transplant Association (ERA-EDTA), has been running a registry on incidence and prevalence of End-Stage Renal Disease (ESRD) and its treatment in Europe. The ERA-EDTA registry (http://www.era-edta-reg.org) currently collects data from almost 30 countries.
In 2005, the QUEST (QUality EUropean Studies) initiative started, with the aim of enlarging the potential and the horizon of the ERA-EDTA registry and to stimulate interest on epidemiology. To this end, within the QUEST initiative a broader data set is being defined based on four areas of expertise, respectively anemia, calcium-phosphate, cardiovascular complications and dialysis adequacy.
For each area of expertise a working group was formed, meeting at several occasions. This process, involving about 90 domain experts, resulted in a data set of 45 items to be collected.
Data collection is realized in two phases. The first phase is a regional or national registry, which collects data from the individual renal centers. The next phase is the ERA-EDTA registry, which collects the data from the regional and national registries. For data exchange between the renal centers, regional/national registries and the ERA-EDTA registry, HL7v3 will be used.
HL7v3 was chosen because of its role as an (emerging) international standard, the underlying models, the use of XML syntax, and because of readily available experience in KfH, a German association on treatment of chronic renal failure. KfH has defined a set of messages for exchange of information that provides a starting point for data collection in the QUEST initiative.
A pilot-implementation working group was formed to speed up the process of realizing HL7v3-based communication. As soon as the first version of the implementation guide is ready, implementation of a pilot version will start in centers in 5 countries (Denmark, Germany, Italy, The Netherlands, UK). The aim of this pilot is to shed light on ease of implementation of the standard, and to find any vagueness or ambiguity in the standard. Lessons learnt from this pilot will be used to refine the standard, and knowledge and tools will be shared in order to leverage implementation in other centers and registries throughout Europe.
Using HL7v3 is a driving force for the process of standardization. The Reference Information Model (RIM) and Refined Message Information Models (R-MIMs) provide a clear demarcation of the items that have to be dealt with. Specifically, models from the Care Provision domain provide the backbone on which the standards are being developed. The fact that these models readily incorporate various data items and coding systems reduces the effort of determining proper ways of representing these items.
Furthermore, these models put focus on important aspects of the data to be collected, mainly on the preciseness of the definitions, the exact meaning of data items, and factors influencing the values that are collected, such as methods and conditions for measurements. This will ultimately improve comparability of the data being collected.
Exchanging data between a variety of centers and registries throughout Europe is a major challenge.
Using HL7v3 for this purpose provides a widely accepted standard, and will stimulate further exchange of data once the messages have been defined and implemented in the information systems that are used. Once the standard is finalized, and pilot implementations have successfully been evaluated, we anticipate adoption of the standard by industry, which will facilitate participation in the QUEST initiative for many more centers and registries. Bringing together clinical expertise, thorough knowledge of registry practice and HL7 experience is essential for the success of this process.