GESUNDHEITSDATENSCHUTZ -- Datennetze und das Gesundheitswesen

DIN is: a non profit-making learned society of GPs as well as a registered charity. It is also intended to provide the framework for a national body for the ethical regulation of electronic clinical data handling as well as the establishment of an Open System for clinical computing. It has a wholly owned subsidiary company in line with the requirements of the charity commissioners to handle all commercial transactions and generate funds for support of the DIN charity (DIN Trading Ltd.).

DIN collects:

and stores, on a daily basis, complete or virtually complete (95%+) clinical activity data in 4-byte Read [after Dr. James Read - avh] coded format from a total of (currently) 800+ GPs spread comparatively evenly nation-wide, using the ethical guidelines set down by the Joint Computer Group of the General Medical Services Committee of the BMA. Statistics derived from our current data panel can be directly scaled-up to provide valid national data for Scotland, England and Wales.

Data from member practices:

is collected invisibly and without any imposed restrictions, and reflects the sum total of all the activity in a particular practice including virtually all repeat prescriptions, 95%+ of acute prescriptions, and in addition, in a very high percentage of records, a direct and unambiguous coded reason for prescribing or discontinuing is linked to the treatment recorded. Individual patients can be identified and followed using a practice number and a practice-unique identifier.

DIN is active:

in the specification of clinical audit and other software to be sold to members at a heavily subsidised cost which will make life at their practices a little less stressful, while subtly encouraging the recording of full and accurate practice activity data.

Research studies:

conducted in the DIN database using resources supplied by Compufile Ltd (our joint venture partner) use counts of changes away from a drug to crudely identify patterns of adverse drug reactions. A detailed examination of all the relevant clinical circumstances for each patient stopping a drug is then carried out. This closely mimics the mechanism of the Yellow Card system with the important difference that the GP does not need to initiate the adverse drug reaction warning himself.

Using the above method we examined the life-cycles of Osmosin, Opren and a number of other 'withdrawn' drugs and found in each case that our system provided reliable adverse reaction warning a considerable number of months in advance of the CSM Yellow-card based system. This finding is currently the subject of a joint research project between DIN and the Dept. of General Practice at St George's Hospital, Tooting, and may eventually involve the CSM.

Using the current DIN data panel:

(6 million patient/years), analysing the numeric BP, lipid and other laboratory data available in conjunction with other clinical data, it becomes (for example) possible to completely re-run the British Heart and Stroke Trials in a very cost-effective manner. Many other less dramatic but extremely useful studies may be carried out with this system which has almost limitless potential for continuous prospective clinical research.

DIN data:

is currently mainly collected from Meditel practices, although DIN has recruited a number of potential data providers from among both EMIS and VAMP users. In addition about 40% of our practices are fundholding.

Analysis of data sub-sets:

taken from a large data panel can provide academics with a very extensive suite of tools for highly cost-effective research. Early warning of serious adverse reactions could enormously reduce product liability costs for drug companies, and post-marketing surveillance of new products could become respectable, transparent to the GPs, and very reliable. Panel size is determined by the needs of the study, but could be as small as 20 practices, and individual de-identified patients could be followed under DIN supervision.