You may, or may not, have noticed that the 6 June was “What matters to you?’ Day”—an international initiative to encourage people to have a “What matters to you?” conversation with people they support or care for. Co-incidentally, it was also the day that NICE hosted the 6th National Shared Decision Making Collaborative in London, where establishing what matters to people is of critical importance. Six years on from the inception of the collaborative, there was a deliberately reflective focus to this event that draws together clinicians, academics, patient organisations, and policy makers to consider how to promote shared decision making across the health and care system.
Many of the attendees were there at the beginning of the collaborative, and some have been considering this problem for 20 years or more. There is clear consensus internationally that shared decision making (SDM) is the right way to be practising in modern health and social care systems. Yet, despite the clear direction and concerted effort over many years, it is apparent that in many cases SDM is still not on the agenda, let alone the default setting. The problem lies in implementation; and the “implementation gap” will be nothing new to students of Evidence Based Medicine (EBM).
It is, perhaps, interesting to draw parallels between the problem of embedding SDM in practice with the challenge of widespread adoption of EBM. The EBM movement came from a realisation that patients weren’t getting the best from healthcare because individual clinicians weren’t making decisions based on the latest and best evidence. Now, thankfully, this kind of practice is unusual. Evidence is everywhere, and we have huge efficient machines to create, collate, and distill evidence so clinicians can use it. However, now we realise that patients aren’t getting the best from healthcare not due to a lack of evidence based options, but because this evidence is being applied without full consideration being given to their individual values and preferences. The evidence is not personalised to them.
It’s taken over 40 years, huge investment internationally, and the involvement of massive organisations such as NIHR, NICE and the Cochrane Collaboration, along with absolute integration into education and training programmes for EBM to get this far (and some would argue there is still much work to be done). Evidence Based Medicine was a paradigm shift in healthcare. We’re going to need the same kind of revolution to achieve the next paradigm shift and make SDM “business as usual.” But we’ve learnt a lot from the EBM movement, so can this help us embed SDM before another 20 years have elapsed?
The collaborative had many suggestions as to how to move things forward. There is a need for more research into how best to equip clinicians with the skills needed for SDM and how to design tools and systems to support them. We need to investigate how to better help doctors and patients communicate and manage uncertainty and come to a shared understanding of medicine. Funding bodies could prioritise this in the same way that new research was prioritised to build the foundations of EBM. Training at all levels, for all professionals, must have SDM integrated throughout the curriculum, not simply as a communications skills cul-de-sac. Professional exams and assessments should centre around SDM, helping clinicians identify how they can continually improve their skills in this complex area. Professional revalidation could explicitly focus on SDM. There should be an organisation analogous to NICE (or even NICE itself with an expanded remit) who is responsible for setting the standards for, and endorsing, decision support tools as well as acting as a repository for these tools and a coordinator for international efforts to progress SDM internationally. And finally policies and systems must complement, support, and reward SDM in practice.
There are real signs of progress. The NHS long term plan contains a clear commitment to personalised care; with SDM at the core. In Scotland (Realistic Medicine) and Wales (Prudent Healthcare) there are well established initiatives that prioritise SDM. There are commitments to improve training for medical students, postgraduate trainees, qualified clinicians, allied health professionals and others to ensure that SDM skills are universal. The GMC have incorporated SDM into the generic professional capabilities framework. NICE are producing a guideline on SDM, have committed to incorporating decision support tools, and are working towards making their guidelines more conducive to SDM conversations. And there are examples of innovative and exciting work being done across the world in countries such as Denmark, the Netherlands, Canada and Australia. International collaborations and shared learning will help us solve our common problems sooner and without duplication of effort.
Shared decision making is here to stay, and it will be “business as usual” eventually. But, despite good progress, there is a lot of work yet to be done and commitments to be upheld. The enthusiasm and expertise of those championing SDM needs to be backed up with the necessary resources, and let’s not ignore the fact that there will need to be considerable financial commitment. This will need to be complemented by support and leadership at the highest level. That way, hopefully, there will be no need for the collaborative to be meeting annually in 20 years time as it will have made itself obsolete.
Sam Finnikin is a GP in Sutton Coldfield and a clinical research fellow at the University of Birmingham. He is interested in how we can improve shared decision making every day practice. Twitter: @sfinnikin
Competing interests: SF was previously affiliated with NICE in a non paid role as a NICE scholar 2015-2016 . He is currently employed by the RCGP as a Fellow for Evidence and Values and also receives income for freelance lecturing and writing