How can one establish a data registry for sharing data? Obviously, the standard is a good start. One however needs to be aware of several considerations which may facilitate or hinder an effective registration operation, especially when it serves a culturally diverse audience.

Is the standard standard ? On one hand, like other registration standards, ISO/IEC 11179-6, Registration of Data Elements, specifies specific rules and procedures regarding the administration of its registries. On the other hand, in order to foster maximum data sharing, this standard has built in many features of great flexibility. Following are some of the characteristics representative of a data registry operating under the framework of ISO/IEC 11179-6:

• Non exclusive registration. Every organization wishing to become an RA shall possess an internationally recognized organization code, assigned in accordance with the procedure prescribed in ISO/IEC 6523. But an RA, through its own procedures, may choose to be restrictive.
• Data sharing registration. A cooperative approach may be adopted: organizations wishing to share information among themselves may want to establish an RA for that purpose. An altruistic approach is also encouraged: An organization may establish an RA for itself and share its data with others.
• Economically enforced registration. The viability of individual RAs depends on other economic and practical benefits to their subscribing communities. If subscribers of a registry do not see the practical benefits of such registry, it will wither of irrelevance.
• Flexible Registration. All data may be registered anytime for sharing. Registration Status denotes the quality of data. Only "standardized" data must comply to the highest quality standard.
• Culturally Adaptable. ISO/IEC 11179 emphasizes the use of non intelligent identifiers (RE: ISO/IEC 11179-5 and 111179-6) for data elements specified for sharing. To each identifier multiple name-context pairs are allowed. This strategy not only allows each country, nation, organization to choose a name or names for a data element, but also provides a vehicle for cross-cultural, cross-organizational information interchange.

How open will a registry be? The advantages and disadvantages of several alternatives each alternatives and practical criteria for each must be considered. The choice among alternatives is an organizational policy matter that must be made based upon due consideration of each organization’s culture and strategic direction.

Hierarchy or anarchy ? The standard allows the establishment of a registry with the least bureaucracy. That may lead to anarchy. Yet the standard also provides guidelines on enforcing a very restrictive hierarchy of registries. Whether registries stay independent or become centralized or federated, the form of hierarchy of registries depends very much on the practical needs of registry subscribers and the costs/benefits of each alternative.

Who is the boss ? Will the Data Registrar or the Data Steward make decisions on the fate of submitted data and registered data ? The roles and responsibilities of major participants in the registration process are among the major factors of the potential success and failure of an RA.

Which registry to whom ? The issue of configuration of a data registry is a non-trivial one. Each RA may choose a different administrative procedure for its registry, requiring a different set of administrative statuses. The design of a registry database may be different from one RA to another. Regardless of potentially different internal structures designed for each registry, interfaces for information interchange must be addressed.

What can be stored in a registry ? Should one wait until the data is "clean" before it can be registered ? Although the standard provides much flexibility in this area, there are some major pitfalls of which one should be aware.

How can a registry be sold ? How well one may manage the cultural change associated with the establishment of a registry may mean success or failure for a data sharing initiative.

Where can I find a reference implementation of ISO/IEC 11179 ? Please go visit the internet:

• US EPA’s Environmental Data Registry (EDR): www.epa.gov/edr. Also please come to the EDR demo on Tuesday night.
• Australian Institute of Health and Welfare’s National Health Information Knowledgebase (NIHK): www.aihw.gov.au/nhik/index.html.
• To be implemented: Census Bureau’s data registry.

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¹ Phong Ngo is the international editor of ISO/IEC 11179-6, Registration of Data Elements. He is also Chair of NCITS/L8, Data Representation. Email: phong.x.ngo@cpmx.saic.com Web: www.saic.com

- NCITS/L8 Web page: www.lbl.gov/~olken/x3l8.html