On the 7th of June, the National Institute for Health and Care Excellence (NICE) hosted its fifth collaborative on shared decision making in London. NICE’s main business is the production of guidelines to help health and social care professionals apply the best available evidence to their practice. However, they have long recognised that even the best guideline has the potential for harm if it isn’t applied with care. Shared decision making is an approach that allows evidence based guidelines to be combined with the patient’s preferences and values to ensure they get the care that is right for them. The collaborative on shared decision making was convened to bring together health professionals, policy makers, academics, and patient representatives to focus on the common goal of promoting and facilitating shared decision making in everyday care.
Shared decision making is not a new idea. It rose to prominence in the 90’s and was heralded as the optimum model for medical decision making. So why are we now, over twenty years later, having to bring together these national experts to discuss implementation? What’s preventing implementation and how we overcome these barriers? NICE are candid about their contribution to the problem and are working on solutions. At the start of the meeting, we heard about plans that NICE have to make the evidence behind recommendations more accessible to assist clinicians in using this information in discussions with patients. Instead of being buried deep in the guideline, a recommendation may be followed by a table summarising the pros, cons, and uncertainties of the recommendation which clinicians can easily incorporate into discussions with patients. This is an important and welcome move which will help clinicians and patients make decisions in a more informed manner. There are also plans for NICE to produce a guideline on shared decision making which I envisage acting as a guide to using guidelines and is certainly a promising prospect.
The attendees were diverse, but united by a common purpose. How do we help patients and clinicians share decisions? Throughout the day we listened to a variety of people discussing projects and plans that are taking steps to make progress in this arena. Patient representatives from the Coalition for Collaborative Care reminded us about the importance of truly listening to our patients and the power of stories. We heard how realistic medicine and prudent healthcare are embedding the principles of shared decision making into everyday healthcare in Scotland and Wales, and how finding and communicating evidence is critical to the process. But there were two themes that kept occurring. Values and conversations.
One of the problems with shared decision making is the semantics. Meetings such as this can get bogged down and distracted by terminology and definitions. However, it seems that people can agree on the importance of values. Only by uncovering a patient’s values are we able to provide advice and recommendations that are consistent with that person’s priorities. None of us are able to provide all the information regarding a particular option, and patients don’t want to be bombarded with excessive facts. It is important however, and indeed enshrined in law through the Montgomery ruling, that we provide sufficient information to allow a patient to make a choice that takes into account their own values.
The difficulty arises, however, in determining a patient’s values. Values differ hugely from person to person; much more widely than we perhaps assume. And to compound this, a patient’s phenotype doesn’t help us uncover their values. Relying on this is a sure-fire way to get it wrong. Instead we need to actively seek to uncover a patient’s values, and we can do this through conversation.
Throughout this meeting we heard about the importance of conversation. Not consultation. Consultation implies a mechanistic, structured exchange which is important for diagnosis, but doesn’t help us much with values. Conversation indicates a more two-way, unstructured, and personal exchange. This still requires skilled facilitation from the clinician, but instead of revealing a medical history, the aim of conversation is to really listen to what a patient is saying about their values and exposing what matters to them. Through conversation we can understand our patients better. Through conversation we can then tailor the information we provide and the advice we give to the person in front of us and truly engage in the sharing of decisions.
Over the five years since NICE started this collaborative it has grown in size and influence. There still remains a lot to be done, but slowly the momentum seems to be building. By bringing people with common goals together, NICE helps ideas to be shared, connections to be built, and enthusiasm to be spread. Through these conversations we find common values and help share the problem we’re all trying to solve; every year a little closer to seeing shared decision making the foundation of healthcare delivery.
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.