Achieving more openness and transparency in clinical research is critical if the basis for evidence based practice is to be completely sound.
The fairly recent recognition of the consequences of publication bias is one part of this: if treatment decisions and clinical guidelines are based on only part of the evidence, then it’s likely that poor clinical decisions will be (albeit unknowingly) made.
The movement to get all trials registered and reported is clearly irking parts of Big Pharma, as this month’s court action against the UK’s Health Research Authority demonstrates (AllTrials campaign). But tackling publication bias is only one part of improving the evidence-base. We also need greater openness about how research agendas are set.
Beavering away since 2004, the folks behind the James Lind Alliance (JLA) have been assuredly developing methods to systematically prioritise the research needed. Their ethos has always been to work with the most important people in any healthcare situation, namely the patients, carers and the health professionals with whom they work.
The JLA approach has been developed, refined and replicated over many years (and published in their guidebook). It seeks to identify and then prioritise treatment uncertainties (or unanswered research questions). Each project supported by the JLA is called a Priority Setting Partnership (PSP) to signal the equal participation of and collaborative working by patients/carers and health professionals.
Mental health features prominently in the JLA’s work, with five of the 49 current or completed PSPs focusing on a mental health condition:
Bipolar disorder Depression Eating disorders (Netherlands) Dementia Schizophrenia
In their most recent article, in a new journal focusing on patient and public involvement and engagement in research (Crowe, et al, 2015), members of the JLA compared the types of treatments prioritised for research by the first 14 PSPs with the treatments being evaluated in studies registered in one of the main clinical trials registries. It makes for interesting reading!
The James Lind Alliance brings patients, carers and clinicians together to identify and prioritise uncertainties, about the effects of treatments.