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Glaucoma including ocular hypertension (OH) has an overall prevalence of about 3%. It can be estimated from the total population of 490 million in the European Union in 2006 that there are about 9,25 million glaucoma and OH patients in Europe. About 900.000 patients are estimated to have advanced glaucoma. Several studies showed that the prevalence of glaucoma and costs for glaucoma treatment will considerably increase within the next decades due to demographic changes. Health economists calculated that about 12 to 15% of these costs can be saved by more transparency and quality of management based on information technologies1.
As glaucoma is a chronic disease, one patient may see several ophthalmologists in his/her life and important information can get lost over time. In addition, many examinations are repeated if patients with a complex glaucoma history get a referral to a glaucoma centre or if they change their ophthalmologist due to other reasons.
Only less than 10 - 16% of all glaucoma patients use some kind of "glaucoma passport". In these documents mostly diagnosis, IOP, and medication, but rarely other relevant data for follow-up examinations is stored. All presently existing solutions are paper based and not multilingual. Existing solutions only use printouts from various glaucoma examination devices and lack the capability to perform e.g. automatic trend analysis of visual fields or other long-term analysis of examinations.
Although some national glaucoma related data sets are available, no structured cross-national datasets for documentation, exchange of medical data, and disease history of glaucoma patients presently exist. Up to now ophthalmologists and patients have no possibility to transfer disease history, images or visual fields from one ophthalmologist to another in a structured, digitalized format.
The purpose of the European Glaucoma Society (EGS) Project "Glaucocard" is to develop an integrated and interconnected electronic European glaucoma data record. This system uses existing data from electronic medical record (EMR) systems and thereby avoids repeated data input which will reduce workload.
The Glaucocard system is not commercial and works on a non-profit basis. Software development is sponsored by pharmaceutical companies by unrestricted grants.
The project offers multiple technical solutions according to the level of computerization available at the ophthalmologist’s office or in different European countries, and can be used with electronic billing systems like in Germany or Austria.
A central secured internet server was selected as the preferred medium for data storage. Security of data transfer is ensured by a combination of asymmetric/symmetric encryption and by anonymization of patient data. Glaucocard reports can also be saved on USB stick or smartcard, particularly where no internet connection is available. Printout forms are also available and can be given to the patient.
During a European consensus conference in April 2007 in Olbia, Italy, the Glaucocard Consensus panel members defined a standardized glaucoma data set for a short and efficient glaucoma report according to international standards of medical and ophthalmological documentation. The terminology of the EGS guidelines was implemented into the system. Field variables were predefined where possible in order to provide the best options for translation into different languages. The results of this consensus were presented on international meetings (ARVO 2007, Fort Lauderdale, World Glaucoma Congress 2007, Singapore).
At the 16th Congress of the European Society of Ophthalmology (SOE) in June 2007 in Vienna the Glaucocard workgroup presented for the first time the feasibility of data transfer between 2 countries with 3 different EMR systems in a live demonstration. The system of the Glaucocard was recently used as a basis for development of the new ICD 11 initiated by the WHO.
At the end of 2008 Phase 1 of Project Glaucocard was completed.
With additional sponsoring Phase 2 of the Glaucocard project is now ready to be launched. Presently the Workgroup is developing a prototype of the Glaucocard which will be presented at end of 2009. During later development of phase 2 about 500 Glaucocards will be distributed to patients for a 12 months period. A total of 25 opthahlmologists/hospitals will be included in this pilot field trial.
1. Traverso et al: Direct costs of glaucoma and severity of the disease: a multinational long term study of resource utilisation in Europe. Br J Ophthalmol. 2005 Oct;89(10):1245-9.