Quality statement 4: Shared decision making
Quality statement
People diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations are supported to make shared decisions throughout all stages of care.
Rationale
Clinical outcomes and patient satisfaction are likely to be better when decisions about care are made jointly between the person with the rare disease and their healthcare provider. A person's preferences about treatment options and outcomes should be discussed, including the impact of travel to specialised centres. People need to have enough information to make informed choices. This should include knowing how to access trusted sources of information.
Quality measures
The following measures may be useful to support assurance and improvement. They are examples of how the statement could be measured but may require adaption depending on local, regional and national commissioning arrangements.
Structure
a) Evidence that healthcare providers actively promote shared decision making for people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations.
Data source: Data may need to be collected at local service, specialist service or network level depending on the commissioning arrangements.
b) Evidence that healthcare providers promote the use of available decision aids, which take account of the trade‑off between potential benefits and harms, to help people make informed choices about treatments.
Data source: Data may need to be collected at local service, specialist service or network level depending on the commissioning arrangements.
What the quality statement means for different audiences
Service providers (such as primary, secondary and tertiary care) actively promote shared decision making for people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations and provide staff with access to relevant patient decision aids.
Healthcare professionals (such as doctors, nurses and allied health professionals) ensure that people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations are given opportunities for shared decision making and to use relevant patient decision aids.
Commissioners ensure they commission services that embed shared decision making for people diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations.
People diagnosed with a rare disease or with a suspected rare disease that has not yet been formally diagnosed reach joint decisions about care and treatment with healthcare professionals. This joint process helps people make decisions about their care that is right for them at that time (including the options of choosing to have no treatment or not changing what they are currently doing). Family members and carers should be included in shared decision making as appropriate.
Source guidance
Shared decision making. NICE guideline NG197 (2021), recommendations 1.2.1 and 1.3.1.
Definitions of terms used in this quality statement
Shared decision making
Shared decision making is a collaborative process that involves a person and their healthcare professional working together to reach a joint decision about their care. It could be care that the person needs straightaway or care that may be needed in the future, for example, through advance care planning. It involves choosing tests and treatments based both on evidence and on the person's individual preferences, beliefs and values. It means making sure the person understands the risks, benefits and possible consequences of different options through discussion and information sharing. [NICE's guideline on shared decision making]
Equality and diversity considerations
Information provided as part of discussions with a healthcare professional should be age-appropriate and meet the person's accessibility needs.