Shared decision making

Make a senior leader accountable and responsible for the leadership and embedding of shared decision making across every organisation or system regardless of its size. This should be a board member or, if the organisation does not have a board, a leader at the highest level of the organisation.

Consider appointing a patient director (from a healthcare service user background) to work with the senior leader and be responsible for:

• raising the profile of the service user voice in planning, implementing and monitoring shared decision making, especially from those in under-served populations

• supporting the embedding of shared decision making at the highest level of the organisation.

Appoint one or more senior healthcare professionals to work with the senior leader and patient director as organisation-wide 'champions' responsible for shared decision making.

Identify one or more organisation-wide 'service user champions' to work with the senior leader, patient director and professional champions for shared decision making. They should be recruited from people who use services.

Develop an organisation-wide improvement plan to put shared decision making into practice, based on recommendations 1.1.6 to 1.1.10.

In developing the improvement plan, identify:

• existing good practice in departments or teams where shared decision making is already being practised routinely, and use their experience

• departments or teams where shared decision making can be put into practice most easily next; continue this process across the whole organisation

• key staff and service users to train as shared decision-making trainers, and suitable providers to deliver the training (see recommendation 1.1.13).

Review how information systems might support shared decision making, for example, by:

• providing ready access to patient decision aids or information about risks, benefits and consequences during discussions with a healthcare professional

• showing the person's past decisions and preferences, values and other information from previous discussions, for example, through a patient-held record (see recommendation 1.2.17).

Set out in the improvement plan how people who use services will be involved in supporting its implementation.

Plan internal or external monitoring and evaluation (including service user and staff feedback activities) and how to present the results to staff at individual, team and management level.

Establish a support network within the organisation for shared decision-making trainers (including service users who are trainers) and healthcare professionals. Consider joining up the support network with others in the wider system and across the region.

Ensure that expertise and information can be shared effectively both within and between organisations so that healthcare professionals provide people with consistent information. See recommendation 1.1.7 and section 1.4 of the NICE guideline on patient experience in adult NHS services.

Organisations should ensure that knowledge, skills and confidence to support shared decision making are included in the induction, training and continuing professional development of all healthcare staff. This should include access to clinical supervision.

Ensure that training and development for healthcare professionals in shared decision making includes the following:

• encouraging people to talk about what is important to them

• understanding the principles that support shared decision making based on an evidence-based model (for example, the three-talk model)

• communicating with people in a way they can understand, using clear language, avoiding jargon and explaining technical terms

• sharing and discussing the information people need to make informed decisions, and making sure they understand the choices available to them (including the choice of doing nothing or not changing the current plan)

• communicating with and involving family members, friends, carers, advocates or other people who the person chooses to include

• using patient decision aids.

Provide access to 'train-the-trainer' style workshops (where healthcare professionals, and potentially service users, are taught to train other healthcare professionals) for key shared decision-making champions in the departments where shared decision making is being rolled out.

Ensure that training is practical (for example, using role play), rather than solely theoretical, so that healthcare professionals can put into practice the skills needed for shared decision making.

Organisations should actively promote shared decision making to people who use their services, for example, offering people training, and using posters or other media (such as appointment letters or websites) to prompt people to ask questions such as:

• What are my options?

• What are the possible benefits and risks of those options?

• How can we make a decision together that is right for me?

Before a discussion, offer the person access to resources in their preferred format (for example, a booklet, flyer or app) to help them prepare for discussing options and making shared decisions. It should encourage them to think about:

• what matters to them

• what they hope will happen as a result of the discussion

• what questions they would like to ask (see recommendation 1.1.16).

Offer to arrange additional support for people who might find it difficult to share in decision making, especially if they do not have, or do not want, support from a family member, friend or carer. Support could come from a nurse, social worker, interpreter or volunteer (for example, an advocate) who can:

• help them to understand the resources provided

• encourage the person to take an active part in decision making

• reassure them that shared decision making will be supported by the healthcare professional they see.

Agree an 'agenda' at the start of each discussion to prioritise together what to discuss. Say how long the discussion will last.

Ensure the person understands they can take part as fully as they want in making choices about their treatment or care.

When discussing decisions about tests, treatments and interventions, do so in a way that encourages people to think about what matters to them, and to express their needs and preferences.

When discussing tests, treatments or other healthcare services:

• explain the healthcare aims of each option and discuss how they align with the person's aims, priorities and wider goals

• openly discuss the risks, benefits and consequences of each option, making sure the person knows this includes choosing no treatment, or no change to what they are currently doing

• clarify what the person hopes to gain from a treatment or intervention and discuss any misconceptions

• set aside enough time to answer questions, and ask the person if they would like a further opportunity to discuss options.

Support the person when they are considering options by:

• delivering information in manageable chunks (chunk and check)

• checking they understand the information (for example, using the teach back technique)

• discussing what matters to them in light of the information provided and checking that their choice is consistent with this.

Give people (and their family members, friends or carers, as appropriate) the time they need to make decisions about tests, treatments and interventions.

Accept and acknowledge that people may vary in their views about the balance of risks, benefits and consequences of treatments, and that they may differ from those of their healthcare professionals.

Make a joint decision or plan about treatment or care, and agree together when this will be reviewed.

At the end of a discussion, state clearly what decisions have been made to make sure there is a shared understanding between the person and their healthcare professional about what has been agreed, what happens next, what the timescales are, and when it will be reviewed.

Explain to the person that they can review their decision earlier than the agreed review date if they want to, and can change their mind about a decision they have made at any time.

When making a record of the discussion (for example, in a person's clinical notes or care plan), record any decisions made along with details of what the person said was important to them in making those decisions. Offer to share this with the person, for example, in a post-clinic letter.

Offer people resources in their preferred format to help them understand what was discussed and agreed. This could be a printout summarising their diagnosis, the options and decisions or plans made, and links to high-quality online resources. Ideally, give people this material to take away, or provide it very soon after the discussion.

Ensure that information provided after discussions includes details of who to contact with any further questions.

When writing clinical letters after a discussion, write them to the patient rather than to their healthcare professional, in line with Academy of Medical Royal Colleges' guidance on writing outpatient clinic letters to patients. Send a copy of the letter to the patient (unless they say they do not want a copy) and to the relevant healthcare professional.

Offer additional support to people who are likely to need extra help to engage in shared decision making. This could include encouraging them to record the discussion, explaining in writing the decisions that have been made, or arranging follow up by a clinical member of staff or a suitable alternative.

Use patient decision aids as one part of an overall 'toolkit' to support shared decision making alongside the other skills and interventions outlined in section 1.2 and section 1.4 of this guideline. If a relevant decision aid is not available, continue to use the shared decision-making principles outlined in this guideline.

Only use a patient decision aid if it is:

• quality assured and reflects evidence-based best practice

• relevant to that discussion and the decision that needs to be made

• relevant to that clinical setting.

Before using a particular decision aid, healthcare professionals should make sure they are familiar with it, including how it will help people to understand which option is best for them.

Think about ways to give staff in the organisation or system access to quality-assured patient decision aids (assessed against NICE's standards framework for shared decision making support tools, including patient decision aids, or the International Patient Decision Aid Standards). This could be by maintaining a database of decision aids that are regularly reviewed and updated, or signposting staff to decision aids produced by national bodies such as NICE.

Organisations should ensure their facilities and systems support staff to provide patient decision aids in multiple ways to suit people's needs, for example, printed or online and available in different languages and formats.

Think about using a mixture of numbers and pictures, for example, numerical rates along with pictograms or icon arrays, to allow people to see both positive and negative framing (see recommendation 1.4.11) at the same time.

Use numerical data to describe risks if available. Be aware that different people interpret terms such as 'risk', 'rare', 'unusual' and 'common' in different ways.

Use absolute risk rather than relative risk. For example, the risk of an event increases from 1 in 1,000 to 2 in 1,000, rather than the risk of the event doubles.

Use natural frequencies (for example, 10 in 100) rather than percentages (10%).

Be consistent when using data. For example, use the same denominator when comparing risk: 7 in 100 for one risk and 20 in 100 for another, rather than 1 in 14 and 1 in 5.

Present a risk over a defined period of time (months or years) if relevant. For example, if 100 people have treatment for 1 year, 10 will experience a given side effect.

Use both positive and negative framing. For example, treatment will be successful for 97 out of 100 people and it will be unsuccessful for 3 out of 100 people.