Electronic Data Collection Options for Practice-Based Research Networks

The possibility of electronically accessing data from clinical practice is a fascinating prospect. What until recently remained buried in the graveyard of personal notes has now in an electronic medical record environment the potential of being shared, in patient care, research or health care policy. This in particular true for where patients’ data are integrated – the records of the primary care physician. That is the reason that the opening of primary care medical records takes central stage in recent policy documents, for example the report of the Netherlands Health Council on the future Dutch general practice in a European context [1]. The Dutch minister of health in response proposed the family phyicisian's (FP) records as the focus point of information – a view echo-ed by researchers in the field of genetics. The need of integrated patient information, together with the technology to deliver it, may easily become one of the most powerful drives for family medicine research and this offers an exciting prospect for practice-based research networks (PBRN). Pace and Staton’s review [2] of the technical implications of electronic data collection in PBRNs from their personal experience and the literature comes at the right time. Now this is an option, the PBRN infrastructure should better be optimized for it and what experience is available, better be shared.

But PBRNs and family medicine research are more than an electronic structure and it is important to keep sight of the larger picture. Long before the electronic era was information collected in and retrieved from practice and at least two lessons learned in that past might still hold true in the electronic era: that of their validity and of the ownership of data collected by practitioners during their patient care. Information should mean what it is supposed to mean in the context of the care for patients and the long and often tumultuous history of the classification of primary care [3] may illustrate that this is not uncalled-for: research requires the translation of the clinical interaction into terminology that allows proper study of the essentials of family practice. Diagnostic criteria [4] and definitions [5] play a key role in this process and have contributed more than the technology of data transport to PBRNs delivering valid data and successful studies [6, 7]. This is where PBRNs differ essentially from ‘family practice production data’ that every practice generates in the process of patient care. Such data can also be collected and analyzed, but there remains uncertainty of their value in translating them into an analysis of the process or outcome of care. Hence the metaphorical mining or fishing expedition.

Pace and Staton express a lot of trust in technology to change databases in useful study material by retrieving, linking, or otherwise manipulating data electronically. I bag to differ and see a core contribution in PBRNs from the participating FPs and their staff. That brings-in the importance of the ownership of data. ‘Ownership’ should not be seen as a mere acknowledgement of who actually delivered the data. Essential is that FPs and their staffs do so in the context of their care for patients, relating the information they collect to their clinical observations and decisions. The more FPs in this way code and classify patient data themselves directly in their (currently: electronic) practice record, the greater the synergism between the clinical and research data.

Material that has been collected with professional care by an FP in the full understanding of their clinical value and meaning is the best guarantee of reliable research output of PBRNs. Electronic technology can facilitate this process in a fascinating way, but that adds to the need of robust data input by (clinically and scientifically) involved FPs.

References: 1. The Netherlands Health Council. European Primary Care. The Hague, 2004. http://www.gezondheidsraad.nl/pdf.php?ID=1119 (successfully accessed 09 June 2005). 2. Pace WD, Staton EW. Electronic data collection options for practice- based research networks. Ann Fam Med 2005; 3 (Suppl 1): S21-S29. 3. Wonca International Classification Committee. International Classification of Primary Care, ICPC-2. Second edition. Oxford, Oxford Press, 1998. 4. Anonymous. ICHPPC-2 defined. Inclusion criteria for the use of the rubrics of the International Classification of Health Problems in Primary Care. Oxford: Oxford University Press, 1983. 5. Bentzen, N. (Ed) Wonca Dictionary of General/Family Practice. Copenhagen: Maanedsskrift for Praktisk Laegegering, 2003. See also:http://www.globalfamilydoctor.com/dictionaryW/Dictionary of General- Family Practice.htm (successfully accessed 09 June 2005). http://www.annfammed.org/cgi/content/full/2/suppl_2/s5 6. Okkes IM, Oskam SK, Lamberts H. The probability of specific diagnoses for patients presenting with common symptoms to Dutch family physicians. J Fam Pract 2002; 51: 31-36. 7. Grauw WJC de, Gerwen van WHEM, Lisdonk van de EH, Hoogen van den HJM, Bosch van den WJHM, Weel van C. Outcomes of audit- enhanced monitoring of patients with type 2 diabetes., J Fam Pract 2002; 51: 459-464.

Competing interests:   None declared