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BMJ. Jan 4, 2003; 326(7379): 2–3.
PMCID: PMC1124922

Using clinical databases in practice

Individualised prediction of survival for patients with cancer may be possible
Nick Black, professor of health services research

In the past decade clinical databases have become increasingly widely used in all industrialised countries. This has been accompanied by enhancements in their quality as a result of greater understanding of the requirements for scientific rigour and the availability of technology that can automate processes such as validity checking. Meanwhile recognition has been growing of the uses to which high quality clinical databases can be put—evaluative research, clinical audit, and managing services.1 A further but less widely recognised application is that of helping patients, together with their practitioners, to make informed decisions about their clinical management.

An example of such an application is the use of a breast cancer database in Finland (p 29).2 The Finprog study uses data on about 2000 women followed up for 10 years to enable an individualised prediction of survival for a new patient by matching her disease profile to that of many previous patients with breast cancer whose outcome is known. The patient and her practitioner can obtain a survival curve for the entire available follow up period, not simply an estimate for a single point in time. Such a system could be applied to any clinical database that includes accurate information on those characteristics of patients that affect clinical outcome.

Such a development could make a major contribution to the promotion of patient centred care and help make meaningful shared decision making a reality.3 The need for such decision support was recognised by the inquiry into paediatric cardiac surgery in Bristol, which noted the failure of staff to provide parents with accurate prognostic information.4 This was not because the information was withheld but because it wasn't available.

The Finprog study illustrates the potential value of such an approach, but it also highlights three challenges that lie ahead. Patients and practitioners are going to require information that is up to date and reflects local clinical services. At present, users of the Finprog study obtain information on the outcomes for a cohort of women diagnosed and treated 10 years ago. But clinical care has moved on. With ongoing recruitment, databases would be able to provide more up to date information (at least for short term outcomes) reflecting current treatment outcomes. The second enhancement needed is the ability to provide data on the outcomes achieved by the healthcare providers a patient is attending, although inevitably the relatively small volume of patients treated in any one setting will limit the statistical confidence of any estimation of prognosis. The third challenge will be to show that this approach not only promotes patients' participation in making decisions but also leads to health benefits.5,6

The potential scope for using high quality clinical databases in this way is rapidly expanding with the growth in the availability of such databases. To encourage their use and enhance their quality, a web based directory of clinical databases (www.docdat.org) has recently been developed.7 This directory is restricted to the United Kingdom, but similar websites could be created in other countries. When complete the directory will provide a description of all multicentre clinical databases that exist in the country and an independent assessment of the extent and quality of the data collected. The growing availability of software such as that developed in Finland is an exciting step forward in promoting the use of databases to inform and support clinical decisions that practitioners and patients face every day.


Information in practice p 29


Competing interests: NB leads the Directory of Clinical Databases (DoCDat) project


1. Black NA. High-quality clinical databases: breaking down barriers. Lancet. 1999;353:1205–1206. [PubMed]
2. Lundin J, Lundin M, Isola J, Joensuu H. A web-based system for individualised survival estimation in breast cancer. BMJ. 2003;326:29. [PMC free article] [PubMed]
3. Coulter A. Partnerships with patients: the pros and cons of shared clinical decision-making. J Health Serv Res Policy. 1997;2:112–121. [PubMed]
4. Department of Health. Learning from Bristol: the report of the public inquiry into children's heart surgery at the Bristol Royal Infirmary 1984-1995. London: Stationery Office; 2001.
5. Entwistle VA, Sowden AJ, Watt IS. Evaluating interventions to promote patient involvement in decision-making: by what criteria should effectiveness be judged? J Health Serv Res Policy. 1998;3:100–107. [PubMed]
6. Estabrooks C, Goel V, Thiel E, Pinfold P, Sawka C, Williams I. Decision aids: are they worth it? A systematic review. J Health Serv Res Policy. 2001;6:170–182. [PubMed]
7. Black N, Payne M. Improving the use of clinical databases. BMJ. 2002;324:1194. [PMC free article] [PubMed]

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