Un modelo de Gestión de datos en una Unidad de Trasplante Hemopoyético

Abstract

Data management can be defined as a systematic and efficient administration of clinical data in order to dynamize clinical processes and research activity. The aim of a data management policy is to offer a versatile response to clinical and research information demands, which is essential for quality improvement and achievement of accreditation standards within a bone marrow transplant setting. We would like to present an overview of the data management model recently implemented in our Stem Cell Transplant (SCT) Unit. Methods: A selection process for a data manager was performed in 2001. Clinical experience, English knowledge and ICT-informatics skills were required in order to assure an adequate coordination with both, the professionals involved in a SCT procedure and the institutions that demand SCT related information. We finally selected a professional among our nursing staff who met the selection criteria. The SCT information management was based on a net working environment (internet and intranet), using specific BMT software (StemSoft®, ProMiSe®) as well as general purpose software (word processors, spreadsheets, electronic databases and statistical packages). Results: Once a working environment based on the use of ofimatic and network tools was set up, the data manager assumed the coordination of the SCT schedule with doctors providing candidate patients for transplant (including the unrelated donor searching process) and other supporting services such as HLA typing and genetics labs, radiotherapy, blood bank and criopreservation unit. To facilitate this coordination, a specific electronic tool was designed on site (GesTHronica®). A virtual stable relationship with official SCT related institutions (National Transplant Organisation, regional health authorities, national marrow donor program…) and national and international scientific societies (Spanish Group for SCT, EBMT and IBMTR) was established. A regular information flow with these organisations was set up for administrative, registry, clinical and research purposes Additionally, the data manager helped SCT program director to normalise and keep accurate and updated the SCT SOPs, which were made available on line. Conclusions: Although data management policy was initially intended to improve registry and research SCT activity, it resulted useful to increase quality of clinical practice. Within this scenario, the relationship with scientific groups and research activity were positively improved.