Guidance

Rationale and impact

Rationale and impact

These sections briefly explain why the committee made the recommendations and how they might affect practice.

Embedding shared decision making at an organisational level

Recommendations 1.1.1 to 1.1.16

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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Putting shared decision making into practice

Recommendations 1.2.1 to 1.2.21

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.

Before a discussion

There was some evidence supporting offering interventions before discussions. Even though the studies that looked specifically at pre-discussion interventions did not show an increase in shared decision making itself, there was some evidence that these kinds of interventions increased people's knowledge and their satisfaction with their discussions. The committee agreed that, although knowledge alone is not enough for shared decision making to take place, it is a necessary part of it.

Supporting evidence also came from studies looking at other types of interventions that were offered before discussions: support from another person ('third party support') and eliciting people's preferences and values.

The committee recognised the benefits of arranging third party support for people who might need additional support to engage in shared decision making. This could include, for example, people who have a condition or disability that makes it more difficult for them to participate. The committee agreed that everybody should be encouraged to bring a family member, friend or carer to discussions if they choose to.

The committee acknowledged that intervention before a discussion was not always practical, for example, if the person needed care unexpectedly or urgently, so these recommendations would be best suited to non-urgent discussions.

During a discussion

The committee updated recommendations on shared decision making in NICE's guideline on patient experience in adult NHS services using the evidence and their expertise, and brought them into this guideline.

The studies looking at what was effective in shared decision making showed the strongest support for eliciting people's expectations, values, priorities and goals as part of interventions based on key stages of shared decision making from the three-talk model. These include 'choice talk' (also called 'team talk') that introduces the fact that there are options, and that the right option will depend on what matters to each person, and 'option talk', when they discuss alternatives addressing the risks, benefits and consequences of each option. These then lead onto 'decision talk', which makes sure a decision is made that is right for each person. The committee agreed it was useful to think about these key stages of shared decision making, but acknowledged that other models of shared decision making were in common use.

Evidence suggested using the three-talk model as a way to structure the shared decision-making process and the committee agreed that the interventions that showed an effect were all consistent with 1 or more of the stages of the three-talk model. In their view, the three-talk model was simple to use and that made it useful in all healthcare settings. The committee agreed, however, that any evidence-based model for shared decision making is useful so they were not prescriptive in the recommendations.

Agenda setting, explicitly stating decisions, the option of no treatment (that is, not choosing any of the treatments offered), and agreeing when to review a decision were not captured in the effectiveness evidence, but the committee considered them to be key aspects of shared decision making.

The committee noted that some people may not want to be involved in shared decision making. They also noted that not all decisions can be shared. People have a right to refuse any treatment, and similarly, healthcare professionals are not obliged to provide any treatment that in their clinical opinion is medically futile (this may need a second opinion or discussion with a senior colleague). Healthcare professionals cannot provide access to treatments that are not available.

The committee talked about documenting discussions. They agreed that recording which options have been discussed and what is important to the person is the best evidence that a meaningful shared decision making dialogue has taken place.

After or between discussions

The committee highlighted that interventions to support shared decision making should carry on after discussions with a healthcare professional because they should be part of a continuing process. They agreed on some methods to support people who might need additional help, such as suggesting that they record the discussion on their phone or other electronic device to help them remember what was said and think about their options.

Future research

The committee made recommendations for research to fill the most notable gaps in the evidence. They agreed that research was needed into how the same shared decision-making interventions differ in effectiveness between different populations and different care settings so they made a recommendation for research on differing intervention effects in different groups. The committee also noted from the evidence that it was unclear what the best measures of shared decision making are and how acceptable different interventions are to people who receive them, so they also made recommendations for research about measuring shared decision making and the acceptability of shared decision making.

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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Patient decision aids

Recommendations 1.3.1 to 1.3.5

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.

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Communicating risks, benefits and consequences

Recommendations 1.4.1 to 1.4.11

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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