User-led research and evidence in psychiatry

M. van Beinum

MRC Social and Public Health Sciences Unit, University of Glasgow, 4 Lilybank Gardens, Glasgow G12 8RZ, UK

The editorial by Faulkner & Thomas (2002) raises serious issues, as did another recent paper (Bracken & Thomas, 2001: see van Beinum, 2001). They present a false dichotomy between (morally good) ‘users’ and (morally irresponsible) researchers, from which flows an unwarranted assumption that somehow psychiatric research rarely has the interests of patients at heart. Their editorial, with its unsubstantiated statements, poor definitions, political banner-waving and lack of understanding of both science and the research process, is the antithesis of considered and evidence-based argument.

There is, however, no doubt that patients and their families should have a substantial voice in helping to set the questions that research attempts to answer, and in establishing mechanisms for ensuring the importance of this process. This does not mean, however, that being a ‘user’ somehow qualifies a person as a top-notch research scientist. Thus, for example, the user-led research quoted by the authors (Faulkner, 2000) was deeply flawed, in that it did not address the issue of researcher bias and some of the conclusions bore no relation to the evidence presented. User groups have their own political agendas and are not representative of the body of patients as a whole.

There is a difference between asking socially relevant questions and conducting sound research. Good research is difficult to do and is best done by teams of well-trained research scientists. Arguing, as Faulkner and Thomas do, that psychiatrists and funding bodies should give equal weight to research conducted by groups of users and by professional researchers is a travesty. We do patients (and ourselves, for many of us have been, or will become, users) no favours by confounding good research with political correctness, for there is nothing more unethical or wasteful than poor research on vulnerable patients.

EDITED BY MATTHEW HOTOPF

REFERENCES

van Beinum, M. (2001) Psychiatrists need different training for 21st century (letter). BMJ, 323, 452.[CrossRef][Medline]

Bracken, P. & Thomas, P. (2001) Postpsychiatry; a new direction for mental health. BMJ, 322, 724-727.[Free Full Text]

Faulkner, A. (2000) Strategies for Living: A Report of User-Led Research into People's Strategies for Living with Mental Distress. London: Mental Health Foundation.

Faulkner, A. & Thomas, P. (2002) User-led research and evidence-based medicine. British Journal of Psychiatry, 180, 1-3.[Free Full Text]


 

Authors' reply

P. Thomas

Bradford Assertive Outreach Team, Bradford University, 48 Ashgrove, Bradford BD7 1BL, UK

A. Faulkner

Mental Health Foundation, London, UK

EDITED BY MATTHEW HOTOPF

We are grateful to Dr van Beinum for drawing our attention to the weaknesses of our editorial. In particular, it is good that he has highlighted the issues of researcher bias and the reprehensible wastefulness of ‘poor research on vulnerable patients’. Presumably, he assumes that professional research, undertaken by ‘teams of well-trained research scientists’, is of high quality and free of bias. Is this so? Let us consider by way of example the drug treatment of schizophrenia. Thornley & Adams (1998) examined the quality of 2000 controlled trials for treatment for schizophrenia from the Cochrane Schizophrenia Group's register. They concluded that half a century of studies of limited quality, duration and clinical utility left much scope for well-planned, conducted and reported trials. The consistently poor quality of reporting is likely to have resulted in an overoptimistic estimation of the effects of drug treatments for the condition. So much for good-quality research in the professional evidence base. What about bias?

The editors of our leading medical journals are clearly concerned about bias in research, particularly that which originates in conflicts of financial interest. Stelfox et al (1998) studied papers published in the New England Journal of Medicine on the use of calcium-channel antagonists in the treatment of cardiovascular disorders. They found that 96% of the authors of positive studies have received financial support from drug companies, compared with 37% of authors of negative studies. In a recent editorial in the New England Journal of Medicine, Marcia Angell (2000: p. 1516) has described the intertwining of academic medicine and the pharmaceutical industry in America, which extends far beyond grant support for research to include:

‘... a host of other financial arrangements. Researchers serve as consultants to companies whose products they are studying, join advisory boards and speakers' bureaus, enter into patent and royalty arrangements, agree to be the listed authors of articles ghostwritten by interested companies, promote drugs and devices at company-sponsored symposiums, and allow themselves to be plied with expensive gifts and trips to luxurious settings. Many also have equity interest in the companies.’

She argues that these links are less to do with the transfer of technology across from academia to industry, than they are to do with marketing and profit. This influence also extends to guidelines on clinical practice. In a recent survey (Choudhry et al, 2002), 87% of 200 authors of clinical guidelines had financial links with at least one drug company, including companies whose products they endorsed. Over half of the authors had been paid to conduct research.

Of course user-led research is biased, but so is most research. Some psychiatric research is of high quality and undertaken out of the highest ideals. Equally, much of it has a murky, less idealistic pedigree, driven by commercial interest. User groups certainly have their own ‘political agendas’, but to pretend that psychiatry does not is either extremely naïve or dishonest. It is time for us to reflect on the need for a little honesty and humility, and for us to acknowledge that there are serious doubts about the independence and integrity of much of what we, as psychiatrists, consider to be ‘evidence’. To begin with, we need a debate about the influence that the drug companies have on our academic institutions, at our conferences, in our journals and in our consulting rooms.

REFERENCES

Angell, M. (2000) Is academic medicine for sale? New England Journal of Medicine, 342, 1516-1518.[Free Full Text]

Choudhry, N., Stelfox, H. & Detsky, A. (2002) Relationships between authors of clinical practice guidelines and the pharmaceutical industry. JAMA, 287, 612-617.[Abstract/Free Full Text]

Stelfox, H., Chua, G., O'Rourke, K., et al (1998) Conflict of interest in the debate over calcium channel antagonists. New England Journal of Medicine, 338, 101-105.[Abstract/Free Full Text]

Thornley, B. & Adams, C. (1998) Content and quality of 2000 controlled trials in schizophrenia over 50 years. BMJ, 317, 1181-1184.[Abstract/Free Full Text]





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