25 May, 16 | by BMJ
by Carl Heneghan
This blog was originally written for Evidence Live blogs and posted on evidencelive.org
The first two articles in this series pointed out we need better and more affordable evidence. Yet, even if affordable high quality evidence is forthcoming it is imperative that patients can make informed decisions and that doctors have the tools to actually inform patients it in practice.
There is, however, growing unease that the current system is not serving patients information needs. Sally Davies, the UK’s Chief Medical Officer (CMO), recently requested a review to restore public trust in the safety and effectiveness of medicines, because patients increasingly see doctors as over-medicating and clinical scientists who are afflicted by conflicts of interest: the CMO therefore considers it is difficult for the public to trust either.
What is clear is that informed patients require an unbiased presentation of reasonable options to consider the benefits and harms of their treatment options. Yet, despite the significant growth in RCTs over the last twenty years there have been few robust studies that have evaluated shared decision making – actually there are none.
A 2015 systematic review of shared decision making strategies, including at least one patient outcome, found 39 studies. But none of these were randomised controlled trials: 28 were cross sectional or before and after surveys, and whilst 8 RCTs were included in the review, the analyses were secondary to the main trial hypotheses, and were therefore conducted irrespective of the group assignment (ie., they weren’t randomised comparisons).
Furthermore, there is a serious under-representation of shared decision-making evidence in many disease areas: fourteen studies in the review were cancer related (10 breast cancer), five each for mental health and diabetes and only two were based in primary care. A further Cochrane systematic review of interventions that aimed to improve the adoption of shared decision making by healthcare professionals found only 5 RCTs, three were done in primary care and two in specialist care.
Hence, it is difficult to advise which strategy, if any, to adopt when it comes to informing patients in real world practice.
While there is little evidence to inform shared decision making strategies there is considerably more evidence for decision aids: over 500 have been developed (an inventory is available here) and 115 randomised trials involving 34,444 participants were included in a recent updated Cochrane systematic review. This review concluded that there is ‘high-quality evidence that decision aids improve people’s knowledge regarding options, and reduce their decisional conflict related to feeling uninformed and unclear about their personal values.’ However, there was less evidence for effects on clinical outcomes and adherence to treatments. A further systematic review of the impact of patient decision support interventions and costs and savings including 7 studies and 8 analyses found that there is some evidence patients choose more conservative approaches when they are better informed; but there is little evidence as to whether this generates any actual savings.
When it comes to informing patients needs there is an obvious dearth of information and evidence in the shared decision making space. What we now need to do is divert some, if not a lot (if not all for one year) of the research funds that are going to waste into this extremely important area that affects all of us all of the time in health care.
Example of shared decision making strategies by Victor Montori speaking at EvidenceLive in 2016:
16:00 Wednesday June 22nd
Victor Montori – How do we make evidence care?
The campaign starts at EvidenceLive 2016 – with an open meeting to prioritize and explore the potential solutions to better evidence for better decisions.
The next in the series will look at better decisions require research that matters.
Carl Heneghan is professor of EBM at the University of Oxford, director of CEBM, which co-organizes the EvidenceLive conference with the BMJ. His research interests span chronic diseases, diagnostics, use of new technologies, improving the quality of research and investigative work with the BMJ on drugs and devices that you might stumble across in the media.