User-led research and evidence-based medicine

Abstract

Evidence-based medicine (EBM) and clinical governance play a central role in raising the quality of medical care. People want clinical decisions to be based on the best evidence and EBM places scientific knowledge in the service of clinical decision-making. Yet a quite different agenda is engaging patients as partners in health research, to make the medical profession more accountable. Here, we examine the epistemological basis of EBM, and the ethical concerns raised by this. In particular, we examine the value of user-led research in psychiatry in improving the concept of ‘evidence’ in evidence-based psychiatry.

The mental health strategy for Europe: Why service user leadership in research is indispensable

“…We argue that 'good research' in relation to these policy priorities is research that has involved service users (see also Faulkner & Thomas, 2002 lives, on what service users want from mental health services, and on how to combat the discrimination and rights violations that they experience. Service user researchers have also developed robust guidelines to help ensure that research involving service user researchers is conducted in a just and ethical manner (Faulkner, 2004).…”

Service user views and service user research in theJournal of Mental Health

“…It has been pointed out for some time that the outcomes measures used in trials and other large-scale studies are considered important from the perspectives of clinicians but may not be from the point of view of service users (Faulkner & Thomas, 2002). For example, conventional researchers prize measures of symptom reduction but service users may be more concerned with side-effects or other aspects of their lives affected by medication.…”

Perspectives of day and accommodation services for people with enduring mental illness

“…While randomised controlled trials are considered to be the gold standard for evaluating effectiveness of intervention being the highest level of evidence, there are alternative views on how effectiveness can be judged (Faulkner 2002). Catty et al conclude that there is no reason why randomised controlled trials could not be used to generate evidence in the day care sector.…”

“…Catty et al conclude that there is no reason why randomised controlled trials could not be used to generate evidence in the day care sector. This conclusion has to be challenged, given the ethical difficulties of implementing trials in a setting concerned with care rather than cure of symptoms (Faulkner 2002, Tanenbaum 2003. The original intention of Cochrane's call for evidenced based medicine was to divert funds wasted on ineffective medical treatment to the care of people whose difficulties were not responsive to medical treatment (Cochrane 1999).…”