Integrating health information: A case study of a health information service for thalidomide survivors

Abstract

Thalidomide damage comprises a range of rare and complex disorders rarely encountered in normal clinical practice. Specific problems associated with the condition include chronic pain and medical procedures including taking blood. The benefit of international networking and the findings of recent research are mentioned. This leads to the establishment of four key requirements for a specialist database, and four priority issues to be included in the planning of a health information service for this group, of which the creation of a database is first. The other three priority issues are the creation of a web-based delivery system, the need to consolidate the specialist information available, and the need to create a system for evaluating and approving the information to be delivered. System design and implementation are discussed and key tasks identified, showing how the four key components of the service will be developed. Difficulties encountered have included decisions about standards to be adopted and identifying commercial organizations capable of completing different aspects of the work. This study illustrates the relevance and possibility of specialist reference centres for other rare disease groups.

Keywords:

• Thalidomide
• congenital limb-reduction deficiency
• rare disease