Uniform pacemaker and ICD information system in the Netherlands

The Central Pacemaker Patient Registry (CPPR) in the Netherlands (founded in 1977) collects information of pacemaker patients from all 110 Dutch hospitals. It contains data of over 98.000 patients, 118.500 pacemakers, 1.950 ICD's and 131.000 leads. Initially data was entered manually. As local databases started to evolve, data-transmission using modems was initiated in 1989. Currently 62 hospitals send data to the CPPR by e-mail. All these databases however showed some drawbacks. They allowed free text entry for the pacemaker type (existing or non-existing), could not send data as requested by the EURID protocol for ICD's, etc. An integrity study has shown that the quality of the data can be improved by enhanced plausibility checking. These conclusions initiated the development of one national Pacemaker and ICD information system for all clinics. After an extensive evaluation one software package was selected as the base of this new system. The locally entered data is checked on completeness and plausibility using centrally distributed reference files on pacemaker types, general practitioners, etc. All data is transmitted through e-mail. Patient data is encrypted. Only the holder of the central database is enabled to decrypt this data. The first version of the system has been released in the fall of 2001 and contained for each clinic a copy of its previously centrally stored data. Frequently updates of for instance new pacemaker types are sent to all clinics. The set-up for connection with the local hospital information systems is incorporated. A pacemaker follow-up agenda, statistical functions and export modules have been added. Customer satisfaction has been the most challenging part of introducing the information system. The conversion of the previously stored data into the new standard proved to be cumbersome. The uniform approach facilitates maintenance, while feedback from the clinics remains essential for maintaining the system to the state of the art. A study about the follow-up in the clinics will use the system to collect data. A major further challenge is the connection of pacemaker programming devices to the system through the HL-7 protocol