Background and context

Shared decision making

The NHS Constitution for England notes that 'Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment.'

Shared decision making is a collaborative process that supports a person and their healthcare professional to work together to reach a joint decision. It could be about care someone needs straightaway, or care they might have in the future, for example through advance care planning. It involves choosing tests or treatments, based on evidence and the person's individual preferences, beliefs, circumstances and values.

It means making sure the person understands the benefits, harms and possible consequences of different options through discussion and information sharing. This joint process empowers people to make decisions about the care that is right for them at that time. The option of choosing not to have treatment is always included.

Terminology used

Traditionally, tools to support shared decision making have been thought of as being either:

primarily aimed at people receiving care to help them make choices about their own care, with the support of their healthcare professionals (tools known as patient decision aids), or
primarily aimed at healthcare professionals to support them in their decision making, involving the person receiving care in the decision as appropriate (tools known as decision support tools).

Our ambition is to bring these 2 approaches together to ensure that decisions about investigation, treatment and care are shared between people and healthcare professionals wherever possible. We aim to transform the terminology in shared decision making to reflect this integration under the heading of 'decision support tools' but for the purposes of this framework, the term 'patient decision aid' or 'PDA' is used throughout, as this is the term most commonly used in the NHS.

The process for information, options and decisions is suggested as follows:

Step 1. Information and context

Information is collected about the condition, such as prognosis, possible diagnoses, likely impact on the person and supporting organisations.

Step 2. Options

The appropriate treatment, investigation and goals are identified in line with the person's needs and what matters to them. The person and their healthcare professional work together to consider all the options and alternatives, and the risks, benefits and consequences of these choices.

Step 3. Decision making and consent

A preference-based choice is made from the available options, then there is a formal agreement about the treatment, procedure, investigation or test. There is also an agreement about how medicines are administered. The decision is recorded and shared with the person.

Steps 2 and 3 are repeated, as necessary.

Patient decision aids

Patient decision aids (PDAs) are designed to:

Help people decide on healthcare options by providing evidence-based information on the available options, likely outcomes, benefits, harms and uncertainties.
Support and prepare people to make informed decisions with their healthcare professional. PDAs do not advise people to choose one option over another and are not meant to replace a conversation with a healthcare professional.
Support health professionals to adopt a shared decision‑making approach in a consultation, to ensure that patients, and their family members or carers where appropriate, can make informed choices consistent with the person's values and preferences.

This framework is designed to help people to identify good quality PDAs to aid that process, and to support the development of these.

Definition of patient decision aids

For the purposes of this framework we have used the definition of decision aids in a 2017 Cochrane Review. It states that people can use PDAs when there is more than one option and neither is clearly better, or when options have benefits and harms that people value differently. They state the decision, describe the options, and help people think about the options from a personal view (for example, how important are possible benefits and harms).

Patient decision aids may vary in length and detail, and may be used before, during, or after a person has spoken to a healthcare professional. They may be intended for the person to read for themselves, to support healthcare professionals during a consultation conversation using standardised, evidence-based information, or for the person and healthcare professional to work through together.

This definition includes any PDAs that:

have a clear decision that needs to be considered
provide evidence‐based information about a health condition, the options, associated benefits, harms, probabilities, and uncertainties
help people to recognise the value of the decision and to help support the value they place on the benefits and harms.

Information for decision making and consent

Every person should have basic information about their condition, treatment and care so that they can engage in and manage their health. Some information is only designed to inform the person rather than to aid decision making.

The information people need for shared decision making (of which PDAs are a part) is the same as needed for informed consent. This framework doesn't cover the consent process, although PDAs are sometimes helpful in supporting this process. For further information about obtaining informed consent, see advice from the General Medical Council (GMC) or another relevant professional body.

Standards framework for shared-decision-making support tools, including patient decision aids

Corporate document