Routinely collected general practice data: goldmines for research? A report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands

Background Much of European primary care is computerised and many groups of practices pool data for research. Technology is making pooled general practice data widely available beyond the domain within which it is collected. Objective To explore the barriers and opportunities to exploiting routinely collected general practice data for research. Method Workshop, led by primary care and informatics academics experienced at working with clinical data from large databases, involving 23 delegates from eight countries. Email comments about the write-up from participants. Outputs The components of an effective process are: the input of those who have a detailed understanding of the context in which the data were recordedan assessment of the validity of these data and any denominator usedcreation of anonymised unique identifiers for each patient which can be decoded within the contributing practicesdata must be traceable back to the patient record from which it was extractedarchiving of the queries, the look-up tables of any coding systems used and the ethical constraints which govern the use of the data. Conclusions Explicit statements are needed to explain the source, context of recording, validity check and processing method of any routinely collected data used in research. Data lacking detailed methodological descriptors should not be published

Open source and international health informatics: placebo or panacea?

The authors explore the history of open source software and how the future of this paradigm can affect global changes to healthcare informatics. They identify four key requirements: 1 to establish an international health informatics open source (IHI-OS) community 2 to develop a kernel that is broad enough but also provides sufficient detail to be usable across international boundaries and across medical disciplines 3 to develop a business case for international health informatics open source 4 to develop international standards

Geefvoorlichting over bloedverwantschap als risicofactor voor aangeboren afwijkingen

In the Born in Bradford study, an increased risk for congenital anomalies was found in the Pakistani subpopulation of Bradford, where cousin marriage is relatively frequent. While consanguinity may be associated with a risk for congenital malformations, it does not prove a causal relationship. Whatever the case, high perinatal mortality as well as the high prevalence of congenital anomalies are good reasons for implementing the knowledge on reproductive risks that has been available for many years. Well-known risk factors include higher maternal age, that was associated with congenital anomalies in the British mothers. Further research in an intervention study may provide more data on whether the associations found are causal. Implementing preconception care should involve primary care physicians, who need both facilities and training. In the Netherlands, the high perinatal mortality, especially in some big cities, could profit from similar interventions. Dutch primary care physicians consider it their responsibility to discuss consanguinity with patients, although there is some reluctance because of anticipated religious and social value conflicts. Without information reaching the target populations, they may lack awareness and will not ask for information themselves. People from Dutch migrant groups would prefer to be informed about reproductive risks of consanguinity by their primary care physicians