In June 2021 NICE published its guideline on shared decision making (NG197). It applies across all health care settings. Its message is simple: decisions about your care should be made with you, not for you. Your clinician brings the medical knowledge, and you bring what matters to you.
That sounds obvious. In practice it often doesn’t happen, and much of what gets in the way is the kind of thing digital services should be good at fixing: information, timing and follow-up.
What the guideline asks for
The guideline has four main parts.
Making it part of how organisations work. NICE recommends that a senior leader, ideally at board level, is accountable for shared decision making. It suggests patient champions too. Without someone senior owning it, it stays a nice idea.
Putting it into practice. Staff should be trained in it from induction onwards, using practical methods such as role play, plain language and “teach back”, where the clinician checks you have understood by asking you to explain it in your own words.
Patient decision aids. These are tools, on paper or online, that set out your options and their pros and cons. NICE says to use quality-assured aids as one part of a wider conversation, not as a replacement for it.
Talking about risks and benefits. NICE recommends using absolute numbers, such as “10 in 100 people”, rather than percentages or relative risk. It also suggests stating the time period, using pictures such as icon charts, and describing outcomes both positively and negatively.
The parts I found most striking
Information you can take away. After a discussion, you should be offered information in a format you prefer, ideally to take home or soon after, along with details of who to contact with questions. How many of us have left an appointment and forgotten half of it by the car park?
Letters written to you. NICE says that after a discussion, clinic letters should be written to the patient rather than to their GP, in line with Academy of Medical Royal Colleges guidance. You should get a copy unless you say you don’t want one, and so should the relevant health professional.
For me this is the quiet revolution in the guideline. A letter written to “Dear Mrs Smith” in plain English is a very different thing from one written over her head to her GP in clinical shorthand. It treats the patient as the person the conversation was about.
Extra help for those who need it. Some people need more support to take part. NICE suggests encouraging them to record the conversation, giving a written summary of what was decided, or arranging follow-up with a member of staff.
Why this links to digital
Much of this depends on information reaching the patient. Letters, test results and records that you can see yourself make shared decisions much easier. You can’t share a decision if you can’t see what it is based on.
That is why I think shared decision making and patients’ access to their own records go hand in hand. If you want to see what your GP record holds, my guide to seeing your GP health record explains how, and the NHS App guide will get you started.
What you can do
You don’t need to wait for the NHS to get this right everywhere. At your next appointment you can ask:
- What are my options, including doing nothing?
- What are the benefits and risks of each, in numbers if possible?
- What happens next, and who do I contact if I have questions?
- Can I have that in writing, or record this conversation?
These questions are not NICE’s wording. Many NHS trusts use a similar checklist called BRAN: benefits, risks, alternatives and doing nothing. Frimley Health’s version is a good example.
Asking these questions is not being difficult. It is exactly what NICE says should happen.