Routine primary care data for scientific research, quality of care programs and educational purposes: the Julius General Practitioners' Network (JGPN).

BACKGROUND: General Practitioners (GPs) in the Netherlands routinely register all patient contacts electronically. These records include longitudinally gathered clinical information of the patient contacts in coded data and free text. METHODS: Diagnoses are coded according to the International Coding of Primary Care (ICPC). Drug prescriptions are labelled with the Anatomical Therapeutic Chemical Classification (ATC), and letters of hospital specialists and paramedic health care professionals are linked or directly incorporated in the electronic medical files. A network of a large group of GPs collecting routine care data on an ongoing basis can be used for answering various research questions. RESULTS: The Julius General Practitioners' Network (JGPN) database consists of routine care data from over ten years of a dynamic cohort of around 370,000 individuals registered with the participating GPs from the city of Utrecht and its vicinity. Health care data are extracted anonymously every quartile of a year and these data are used by researchers. CONCLUSION: We describe the content and usability of our JGPN database, and how a wide variety of research questions could be answered, as illustrated with examples of published articles.

Primary care patients with heart failure in the last year of their life.

BACKGROUND: Quantitative information about the management of patients with advanced heart failure (HF) is scarce. OBJECTIVE: To assess the management of primary care patients with HF in their last year of life. METHODS: A retrospective observational study performed in 23 general practices in the Netherlands. The medical records of 399 patients with a diagnosis of HF and who died between 2001 and 2006 were scrutinized to review treatment and care in the year preceding death. RESULTS: The mean age at death was 82.3 (SD 8.8) years, and the median time between diagnosis and death was 48 months (range 3-285 months). In total, 55.9% died at home or home for the elderly, 32.6% in hospital and 11.5% in a nursing home or hospice. The mode of death was in 28% sudden death, in 23% progressive HF and in 49% others. During the last year of life, patients on average visited 0.4 times the cardiology outpatient clinic and needed on average 12.1 (range 0-53) home visits of the GP. At the end of life, 35% of all the patients received opioids, 7% haloperidol, 7% oxygen and 5% diuretics intravenously. Patients co-treated by a cardiologist received similar care, however, they used more HF drugs than patients managed solely by the GP. CONCLUSIONS: A minority of patients with advanced HF have a terminal phase and died of progressive HF. In the last year of life, the GP is the main provider of care.