High-level leadership

1.1.1.

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.

1.1.2.

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.

1.1.3.

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.

1.1.4.

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.

Planning and implementing shared decision making

1.1.5.

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

1.1.6.

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).

1.1.7.

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).

1.1.8.

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

1.1.9.

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.

1.1.10.

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.

Sharing information

1.1.11.

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.

Supporting healthcare professionals’ skills and competencies

1.1.12.

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.

1.1.13.

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.

1.1.14.

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.

1.1.15.

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.

Promoting shared decision making to people who use services

1.1.16.

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

1.2.5.

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).

1.2.6.

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.

During a discussion

1.2.7.

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

1.2.8.

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

1.2.9.

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.

1.2.10.

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.

1.2.11.

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.

1.2.12.

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

1.2.13.

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.

1.2.14.

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

1.2.15.

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.

1.2.16.

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.

1.2.17.

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.

After or between discussions

1.2.18.

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.

1.2.19.

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

1.2.20.

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.

1.2.21.

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.

Healthcare professionals

1.3.1.

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.

1.3.2.

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.

1.3.3.

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.

Organisations

Also see recommendations 1.6.10 to 1.6.12 in NICE’s guideline on medicines optimisation on making patient decision aids available for consultations about medicines.

1.3.4.

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.

1.3.5.

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.

Discussing numerical information

1.4.5.

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.

1.4.6.

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.

1.4.7.

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.

1.4.8.

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

1.4.9.

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.

1.4.10.

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.

1.4.11.

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.

Why the committee made the recommendations

Although a reasonable number of quantitative studies were identified, their usefulness was limited because it was often unclear whether or not interventions were effective, so the committee could not recommend specific interventions. There was qualitative evidence and evidence from experts on the ways shared decision making had been implemented internationally. Using this evidence and their own expertise, the committee recommended ways organisations could embed shared decision making into everyday practice.

The importance of strong leadership was a particularly prominent theme in the expert evidence and this was supported by the committee’s views. In their experience, having a commitment from senior managers and leaders to shared decision making is essential because they can make sure resources are prioritised to support it and help to instil a culture of involving people who use services across the whole organisation. This could also be supported by choosing staff to be champions within the organisation and appointing patient leaders. These people would provide a strong voice to advocate for this approach and could act as ‘influencers’, passing on their knowledge and training in shared decision making to their colleagues.

The committee also agreed that appointing a person who uses services to a patient director post enabled service-users’ voices to be heard at the highest levels of the organisation. Although the committee agreed this was a good idea, they were also aware that appointing a director-level post in an organisation was a large financial investment that might not be possible, especially in smaller organisations. For this reason, they agreed only to recommend this as an option to consider.

The committee discussed the importance of an organisation-wide plan for implementing shared decision making and made recommendations based on expert evidence from organisations that had successfully achieved this. These included using digital technology to support shared decision making (for example, through patient-held records) and putting in place ‘train-the-trainer’ style training. The committee agreed this was the most useful way to approach shared decision making training because it brought the necessary expertise in-house. Based on expert evidence and their own expertise, the committee recommended establishing support networks for these trained healthcare professionals and service users. This can improve how the implementation of shared decision making is monitored and communicated across organisations and areas.

The committee also used the expert evidence and their own expertise to recommend how to involve people who use services in implementing shared decision making and monitoring and evaluating its use in practice.

The committee was aware of national resources that might support developing a plan to implement shared decision making, such as the NHS England and NHS Improvement shared decision making summary guide and implementation checklist. In the short term, the roll-out of shared decision making might create further inequalities in services where it had not yet been implemented, but the committee agreed this was temporary and unavoidable.

Although shared decision making is most often carried out between people and their healthcare professionals, other practitioners (for example, healthcare assistants and some administrative and management staff) may also need to have shared decision-making skills, training and support. The committee noted resources and e-learning that might support this, such as the health literacy e-learning resource produced by Health Education England and NHS Scotland.

Because of the lack of published evidence about rolling out shared decision making across organisations, and about sustaining shared decision making in organisations, the committee made a recommendation for research on sustaining shared decision making.

How the recommendations might affect services

The committee hopes these recommendations will help increase the use of shared decision making in organisations by overcoming common barriers. Implementing the recommendations could have a modest impact on resources (for example, training or monitoring), but some changes, for example, appointing a patient director, could have a much larger impact.

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Why the committee made the recommendations

In the committee’s view, shared decision making should be treated as an ongoing process rather than a one-off event. Using excellent communication and shared decision-making skills alongside a combination of other interventions that support shared decision making is likely to be most effective because no single intervention can be a one-size-fits-all solution, and the evidence supported this. The best available evidence was for multicomponent rather than individual interventions.

The committee also wanted to highlight that shared decision-making interventions may need to be adapted to specific settings and populations. The same intervention would need to be tailored differently to be used in a GP appointment, an outpatient clinic and inpatient hospital admission. In the committee’s view, this also applies to remote discussions (for example, by phone or video). The committee agreed that the same skills and principles would be relevant even though the exact methods would be context dependent.

The committee noted the importance of the ‘digital divide’, with some people being unable to access or less familiar with things like online discussions. The committee did not see strong evidence about this and agreed it was an important area for research because of the increase in remote discussions in response to COVID-19. As a result, they made a recommendation for research on shared decision making in remote discussions to explore this further.

Providing information is important, but the committee wanted to emphasise that it needs to be of good quality, for example, NICE-accredited. The committee was aware that other quality standards exist, like the PIF TICK quality mark for patient organisations. There are also useful resources, such as ‘ask 3 questions’ and other tools to help people prepare, on the NHS England website.

How the recommendations might affect services

The recommendations will help to increase the use of shared decision making in day-to-day clinical practice by suggesting effective methods to support it. Some of the options in the recommendations may need additional resources, for example, using a healthcare worker to provide third party support, but others can be integrated into current practice, for example, encouraging a person to record their discussion. There is also a potential that in some healthcare settings, appointments or consultations may need to be longer and this could represent a substantial resource impact, but might lead to fewer subsequent appointments and will ensure that the right decisions are made with people.

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Why the committee made the recommendations

There was strong evidence to support using patient decision aids before, during and between discussions. However, the committee wanted to make it clear that decision aids alone do not deliver shared decision making but should be seen as 1 component of a wider approach. There would never be a patient decision aid available to support every discussion, and healthcare professionals still need to have the skills described in this guideline to engage people in making shared decisions irrespective of whether decision aids are available.

The committee agreed that for patient decision aids to be most useful, staff should have access to quality-assured patient decision aids either via a maintained database or signposting to those produced by national bodies. They also highlighted that even though the evidence favoured using patient decision aids, it is crucial to provide them to people in formats they can use and understand otherwise they would not be useful. In the committee’s view, organisations should think about ways to make sure that a database of quality-assured decision aids is available to their staff in many different formats and that systems support using them in different ways. In the committee’s experience, accessing decision aids in suitable formats is not always possible – for example, facilities to print out decision aids are not always available in consulting rooms across organisations, and some decision aids cannot be printed because of their format, for example, if they have a block colour background that requires a lot of ink.

How the recommendations might affect practice

The committee agreed that there were many good-quality patient decision aids that healthcare professionals could use and that more were being developed all the time. Many of them are freely available. Maintaining a database of decision aids could have a moderate resource impact, but the committee noted that these could be set up in collaboration with other organisations to maximise ‘economies of scale’. The committee also noted that there might be some resource impact of printing more material for people.

Return to recommendations

Why the committee made the recommendations

The committee updated recommendations on communicating risks and benefits from NICE’s guideline on patient experience in adult NHS services and brought them into this guideline.

The committee agreed that people’s interpretation of risks, benefits and consequences is fundamentally embedded in their values and priorities, which explains why people do not weigh risks, benefits and consequences in the same way as others, or indeed in the same way as professionals.

The committee agreed that a person can only make an informed decision if they are given enough information to do so, and if the risks, benefits and consequences presented to them relate directly to their circumstances and what is important to them. Information about risks and benefits will be weighed differently in different situations and depending on a person’s prognosis and the decisions they have to make. They discussed the evidence about presenting absolute risks compared with relative risks and noted that absolute risks are much clearer, especially when accompanied by visual summaries. They agreed that presenting relative risks alone was misleading and that relative risk should only be introduced as a supplement to absolute risks.

The committee wanted risks and benefits to be personalised using high-quality numerical data when these are available. Ideally, healthcare professionals would be able to provide personalised risk calculations. However, the committee acknowledged that personalised risk information is often not available. This means healthcare professionals often need to use generalised information about risks, benefits and consequences (usually available in good-quality decision aids) and explain to the person how it relates to them (for example, above average, average or below average levels of risk). Explaining how much uncertainty surrounds these estimates will help people interpret that information and what it means for them. The committee highlighted guidance from the General Medical Council (GMC) for more information – although GMC guidance is written for doctors, they agreed it provided an example of good practice for all professionals.

How the recommendations might affect practice

These recommendations will help healthcare professionals explore risk, benefits and consequences of healthcare decisions with people. The committee noted that because the recommendations in NICE’s guideline on patient experience in adult NHS services have been in place since 2012, there should be no resource impact.

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