Commentary: Epidemiology needs the patients to survive
Professor of Cancer Surveillance, Erasmus MC Rotterdam, Department of Public Health, PO Box 2040, 3000 CA Rotterdam, The Netherlands.
E-mail: j.coebergh{at}erasmusmc.nl
Accepted 12 July 2007
According to Pubmed, the pessimistic and rather emotional paper of Ken Rothman on the presumed rise and fall of epidemiology in 19801 was his 59th after being in the ‘business’ for almost 10 years. He was undoubtedly speaking on behalf of many of his colleagues at the time in expressing the threatened demise of his profession. By 2007, having become an influential teacher, he has been involved in 209 articles on a wide range of subjects, often in the domain of congenital defects, early life exposures, pharmaco-epidemiology and disease aetiology. In 1981, he was still optimistic enough to found the New England Epidemiology Institute which was to successfully train a large number of post-graduate students in the subsequent 20 years, and he became the first editor of Epidemiology in 1990. Today, he is still actively teaching and advising all over the world and co-authoring articles. So, if he did not live up to his own prediction or sought to refute it, were his alarming early warnings appropriate?
From the same period I recall a long, worried letter of my tutor Hans Valkenburg (founding Professor of Epidemiology in Rotterdam) to the Dutch Ministry of Justice on the same topic. He was attacking the potential for mis-interpretation of epidemiological findings by members of the legal profession in pursuing patient rights. But, in my perception it is not only the legal profession, but also some of our own professional colleagues that misunderstand their position and start meddling with research proposals, thus giving lay people the impression that proposed research is of doubtful benefit and may even be dangerous for patients. In my view, this happens partly out of a combination of well-intentioned curiosity, misguided animosity and risk aversion. So, what we see is that a well intentioned concern for privacy or patient safety degenerates into bureaucratic time-consuming behaviour. How to address that, is the question.
What was missing from the paper by Rothman was an understanding of the new directions of epidemiology. Of course that is easier to see now after another 25 years of experience and, especially in the last 10 years, battles for less and better rules that leave room for giving substance and clarity to the interpretation and implementation of results. Self-developed guidelines, self-regulation and more consistent, responsible behaviour did the rest, although in a few countries, e.g. in former Eastern Europe, political changes made distrust of professionals the key to progress.
But by re-publishing this subjective paper, the question arises: did it change anything it was attacking or was it just the first symptom of a new epidemic of rules which had to run its course? It seems the latter. Of course, in retrospect it is easy to see that during the late seventies several major trends came together: the emergence of patient concerns and rights since the 60s as part of the trend towards individualism and litigation, the rights and needs of research subjects (on which another Rothman wrote an insightful book ‘Strangers at the Bedside’2), and the culture of risk aversion, so eloquently described by the philosopher Wildavsky3. Add to that the emergence of the digital age in which the trade of the biomedical epidemiological investigator is not only to extend and globalize knowledge, but also to draw public attention to the vested interests of big business in both health-promoting and health-damaging products. Last but not least, there are powerful government interests in search of control of this ever expanding sector with so much public money involved and issues of equality. It is probable that all these factors influenced the maturation of epidemiology at large, a maturation which generally occurred only during the 80s and 90s, pioneered by a number of well-known researchers in the 60s and 70s. Is it surprising that Rothman does not mention the contribution of Scandinavian and British epidemiology at all—it was certainly there. Or is it indeed a case of America ‘uber alles’, here? Interestingly, in 1980 the USA congress needed Doll and Peto4 to help and restrain the lawmakers from the totally crazy world of an inflated fear of chemical and dietary cancer risks suggested by ‘more research demanding’ lobbies paid by big tobacco and other vested interests, as we know from the insightful book of Proctor on the history of the wars against cancer.5 Has epidemiology really been flourishing in all these controversies? And what about the tremendous amount of epidemiological research on the health effects of low-dose radiation during the 80s? How has this fomented distrust against high technology?
No one can deny that the bureaucratic nightmares sketched by Rothman have become reality to some extent, all over the world, implying that we are dealing with a genuine phenomenon, the question of trust. But where is it least affected? My impression is that it is in Scandinavia, consisting of relatively small populations with quite close links between the public, lawmakers and well-trained researchers with access to many cohorts of people with greater or lesser exposures, and where health care is still a social enterprise. The roles of commerce and business in society might be another big difference. Wasn't American medicine in 1981 on the eve, or already in full swing, of becoming a very commercial activity of promotion, of exaggeration—in fact a culture of hope and fear? In a recent Economist article6 it was estimated that the USA in 2002 spent an annual amount of about 350 billion dollars on the regulation of health care (including litigation) and of innovation and research of which only about 50% generates benefits at all (and often to the wrong people, such as lawyers). Isn't this our current future nightmare, in all parts of the post-industrialized world?
The question might, however, be: could unrestrained, professionally determined work by epidemiologists such as Rothman was pleading for have prevented the risk-aversion and risk-exaggerating inequality promoting approach of modern medicine and biomedical industry in the USA at large. Why did not epidemiology team up more with the disciples of donabedion with his sound theories on assessment of quality of care, pleading for population-based study designs?7 Perhaps, we need even more of the desirable huge follow-up studies and biobanking, and better post-marketing surveillance to create more clarity on predictive value of new biomarkers and health risks of modern technology with, of course, a reasonable degree of financial independence. We would spend only fractions of that money with much better results for society.
As far as I can see we have come full circle. The same patient rights that were frustrating American epidemiologists about 25 years ago (and Europe a little later) should now be invoked or stimulated to let us do our work in their interest without restriction and to limit regulation. That is already happening with increasing success in emerging lobbies of epidemiologists with other biomedical scientists who recruit their own lawyers to devise self-regulation in order to create trust in the process and outcome, e.g. of biobanking.8 Paradoxically, we might only be able to restrain the regulators and legislators by more self-regulation and self-restraint in zealously criticizing each other. Let us instill confidence in information-hungry patients who generally appreciate being informed on content and methodology.
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1 Rothman KJ. The rise and fall of epidemiology, 1950–2000 AD. New Engl J Med (1981) 34:600–02.
2 Rothman D. Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (1991) New York: Basic Books.
3 Wildavsky A. Searching for Safety (1988) New Brunswick (USA) and London: Transaction Books.
4 Doll R, Peto R. Causes of Cancer (1981) London: OUP.
5 Proctor RN. Cancer Wars: How Politics Shapes What We Know and Don't Know About. Cancer (1995) New York: Basic Books.
6 The Economist. An Unhealthy burden. In: Economics Focus (2007) June 30. 76.
7 Donabedian A. The epidemiology of quality. Inquiry (1985) 22:282–92.[Web of Science][Medline]
8 Oosterhuis JW, van Veen EB, Coebergh JWW. Tumour banks: well-guarded treasures in the interest of patients. Nat Rev Cancer (2003) 3:73–77. [Review].[CrossRef][Web of Science][Medline]
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