Version incremented from 0.2 to 0.3 before start of new phase
Version incremented from 0.3 to 0.4 before start of new phase
Version incremented from 0.4 to 0.5 following review by assurance committee
Version incremented from 0.5 to 0.6 with amends prior to endorsement
It is recognised that the SDM process may occur before, during and after multiple patient contacts with professionals. These touchpoints should be recorded and linked in systems to the shared decision discussed.\u00a0
The NICE guideline on shared decision (see\u00a0https://www.nice.org.uk/guidance/ng197) making states in section 1.2.1:\u00a0
\"Support shared decision making by offering interventions at different stages, including before, during and after discussions, so that people are fully involved throughout their care.\"
Alignment to the workforce dataset NHS Occupation codes primarily is advised. Where no code is available, free text may be used.
\nNational Workforce Data Set (NWD) NHS Occupation codes are found here: -\u00a0https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/national-workforce-data-set-nwd-and-nhs-occupation-codes. To access the list of roles, download the 'NWD dataset specification' using the link on the page.
\nThe Staff Groups and Job Roles are listed in the \u2018NWD Class & Codes Appendix\u2019 tab of the attached NWD Dataset from row 640. The 'Staff Group' and 'Job Role' segments are contained in one field named 'Job' which work together e.g. Staff Group = Nursing & Midwifery Registered and Job Role = Staff Nurse.
\n "}]}, {"type": "group", "minimumMultiplicity": "1", "maximumMultiplicity": "1", "mro": "M", "name": "Responsible professional", "implementationGuidance": "The name and role of the professional that had overall responsibility for the person e.g. consultant, nurse consultant, midwife, allied health professional (may not have actually seen the person).", "description": "The name and role of the professional that had overall responsibility for the person e.g. consultant, nurse consultant, midwife, allied health professional (may not have actually seen the person).", "concept": [{"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Name", "implementationGuidance": "The name of the responsible professional.", "description": "The name of the responsible professional.", "valueSets": "Free text", "valueDomain": [{"type": "string", "property": [{"maxLength": "70"}]}]}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Role", "implementationGuidance": "The role of the responsible professional", "description": "The role of the responsible professional", "valueSets": "\nAlignment to the workforce dataset NHS Occupation codes primarily is advised. Where no code is available, free text may be used.
\nNational Workforce Data Set (NWD) NHS Occupation codes are found here: -\u00a0https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/national-workforce-data-set-nwd-and-nhs-occupation-codes. To access the list of roles, download the 'NWD dataset specification' using the link on the page.
\nThe Staff Groups and Job Roles are listed in the \u2018NWD Class & Codes Appendix\u2019 tab of the attached NWD Dataset from row 640. The 'Staff Group' and 'Job Role' segments are contained in one field named 'Job' which work together e.g. Staff Group = Nursing & Midwifery Registered and Job Role = Staff Nurse.
\n "}]}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Person accompanying patient", "implementationGuidance": "Identify, where clinically relevant, others accompanying the patient, e.g. parent, relative, friend. Includes: Name, Relationship, role (e.g. informal carer).", "description": "Identify, where clinically relevant, others accompanying the patient, e.g. parent, relative, friend. Includes: Name, Relationship, role (e.g. informal carer).", "valueSets": "NHS data dictionary : - Person full name \n ", "valueDomain": [{"type": "string", "property": [{"maxLength": "70"}]}]}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Use of an interpreter", "implementationGuidance": "The General Medical Council (GMC) guidance on Decision making and consent (see\u00a0https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent)\u00a0says in section 27e:
\"To help patients understand and retain relevant information you should: use an interpreter or translation service if they have difficulty understanding spoken English.\"
Type of contact e.g. GP consultation, outpatient attendance
", "concept": [{"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Coded value", "implementationGuidance": "There is no existing code set, and until one is identified or created, use the free text item.
", "description": "\nCoded value for contact type
\n "}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Free text", "implementationGuidance": "Free text if the coded value for type of contact is not available e.g. GP consultation, outpatient attendance", "description": "\nFree text if the coded value for type of contact is not available e.g. GP consultation, outpatient attendance
\n ", "valueSets": "Free text", "valueDomain": [{"type": "text", "property": [{"maxLength": "150"}]}]}]}, {"type": "group", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Audio or video recording of the conversation", "implementationGuidance": "This section is relevant only in cases where the clinician wishes to record, store and share the conversation (with the person). It does not apply where the person makes a recording of the conversation on their own personal device for their own private records.
The General Medical Council (GMC) guidance on Decision making and consent (see https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent) states in section 27c:
\"To help patients understand and retain relevant information you should: accommodate a patient\u2019s wishes if they would like to to record the discussion.\"
", "description": "Audio or video recording of the conversation cluster.", "concept": [{"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Audio or visual recording made", "implementationGuidance": "An indicator to record if an audio or video recording was made of the conversation.", "description": "An indicator to record if an audio or video recording was made of the conversation.", "valueSets": "SNOMED CT : - 431315003 |Audio recording of patient interview (procedure)| or 282733006 |Video recording of patient interview (procedure)|."}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Consent for audio or video recording of the conversation", "implementationGuidance": "The General Medical Council (GMC) Making and using video recordings of patients guidance (see\u00a0https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/making-and-using-visual-and-audio-recordings-of-patients)\u00a0states in section 8 the following:
\"make recordings only where you have appropriate consent or other valid authority for doing so.\"
\"ensure that patients are under no pressure to give their consent for the recording to be made.\"
\"And you must not: disclose or use recordings for purposes outside the scope of the original consent without obtaining further consent (except in the circumstances set out [elsewhere in that document].\"
The GMC guidance on Decision making and consent (see\u00a0https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent)\u00a0states in section 6 that:
'While some interventions require a patient\u2019s signature on a form, for most healthcare decisions you can rely on a patient\u2019s verbal consent, as long as you are satisfied they\u2019ve had the opportunity to consider any relevant information... and decided to go ahead. Although a patient can give consent verbally (or non-verbally) you should make sure this is recorded in their
The free text field could be used to enter a hyperlink to the recording.
The General Medical Council (GMC) guidance on Decision making and consent (see https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent) states the following in section 23:
\"If you make a recording as part of a patient\u2019s care you must follow our guidance on Making and using visual and audio recordings of patients. Such recordings form part of the medical record and should be treated in the same way as other records.\"
\"Recordings made by patients are owned by them and do not have to be stored with their medical records.\"
Alignment to the workforce dataset NHS Occupation codes primarily is advised. Where no code is available, free text may be used.
National Workforce Data Set (NWD) NHS Occupation codes are found here: -\u00a0https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/national-workforce-data-set-nwd-and-nhs-occupation-codes. To access the list of roles, download the 'NWD dataset specification' using the link on the page.
The Staff Groups and Job Roles are listed in the \u2018NWD Class & Codes Appendix\u2019 tab of the attached NWD Dataset from row 640. The 'Staff Group' and 'Job Role' segments are contained in one field named 'Job' which work together e.g. Staff Group = Nursing & Midwifery Registered and Job Role = Staff Nurse.
"}]}]}]}, {"type": "group", "minimumMultiplicity": "1", "maximumMultiplicity": "1", "mro": "M", "name": "Problem list", "implementationGuidance": "A new shared decision record must be linked to an active problem or issue within systems. The SDM process begins with a problem for the person that needs resolution (see\u00a0https://doi.org/10.1016/j.pec.2019.07.020) by investigation, treatment or other method including the option to do nothing.\u00a0The problem or issue for which a shared decision\n was made. The problem will typically require an investigation, treatment, procedure or lifestyle intervention or a change to these e.g. starting, stopping, or switching a prescribed medication. Medical problems or issues might include signs, symptoms, a diagnosis, risk factors, examination findings or investigation results, or other issues.
", "description": "A summary of the problems that require investigation or treatment.", "informationType": "<p>Event.Record</p>", "concept": [{"type": "group", "minimumMultiplicity": "1", "maximumMultiplicity": "*", "mro": "M", "name": "Problem list record entry", "implementationGuidance": "This is a problem list record entry. \n \n There may be 0 to many record entries under problem list. \n \n Each record entry is made up of a number of elements or data items.", "description": "This is a problem list record entry.This is the problem that is the subject of the SDM conversation.
", "description": "A condition which needs addressing and so is important for every professional to know about when seeing the person.SNOMED CT.
\n ", "concept": [{"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Coded value", "implementationGuidance": "The SNOMED CT codes for this element are to be confirmed with NHS England.
To minimise the recording burden on clinicians it is optional to record this field.
\nThe GMC guidance on decision making and consent (https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent) advises clinicians in section 51 that:
\n\"You should take a proportionate approach to the information you record...\"
\nThe NICE guideline on Shared Decision Making (see\u00a0https://www.nice.org.uk/guidance/ng197) states:
\nIn section 1.2.1:
\n\u201cSupport shared decision making by offering interventions at different stages, including before, during and after discussions, so that people are fully involved throughout their care.\u201d
\nIn section 1.2.5:
\n\"Before a discussion, offer the person, adult or child, access to resources in their preferred format (for example, a booklet, flyer or app) to 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.\"
\nIn section 1.2.5:
\n\"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:
\nhelp 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.\"
A record of the actions taken to prepare the patient to make a shared decision before the discussion where a shared decision was made. This should include a summary of any resources the person was offered to prepare them for the decision making process.
", "valueSets": "Free text.", "valueDomain": [{"type": "text"}]}, {"type": "group", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Discussion actions", "implementationGuidance": "A record of the actions taken to support shared decision making during the discussion.", "description": "A record of the actions taken to support shared decision making during the discussion.", "concept": [{"type": "group", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Decision dialogue (deliberation)", "implementationGuidance": "\nThe clinician may want to record all those individuals explicitly involved in making the decision, providing them with a record of the\u00a0SDM discussion and a list of follow up actions if relevant. Ascertaining and recording who were those involved in a shared decision is dependent on a professional's judgement, but will occur usually where a\n person lacks capacity and with the agreement of all those involved in the decision.\u00a0
\nIn the case of children, Gillick or Fraser competence should be used to determine if the discussion is with the child or parent/guardian or both. The NICE guideline [NG204] Babies, children and young people's experience of healthcare (https://www.nice.org.uk/guidance/ng204) emphasises in section 1.2 involving children and young people in their healthcare and\n understanding what matters to them, and states in 1.5.1 \"Involve parents or carers in discussions and decisions about the care of babies and young children, and recognise that parents or carers will be their principal caregivers and advocates.\" And in 1.5.2 \"Give all children and young people opportunities to express their opinions about their health needs\n independently, including: \u2022 asking them about the extent to which they want their parent or carer to be involved in their healthcare \u2022 offering to see them separately from their parents or carers for part of the consultation.\" It also states in 1.5.18 \"Children and young people must have access to an independent advocate in line with statutory requirements. This\n includes the Mental Health Act 2007, the Care Act 2014 and the Mental Capacity Act 2005.\"
\nMental capacity assessment is not within scope of the SDM standard, but where this has been conducted at or prior to an SDM encounter this should be recorded in the electronic patient record. The PRSB consultation raised the importance of checking for records of legal power of attorney and considering whether an independent mental capacity advocate (IMCA) might\n be needed.\u00a0
", "description": "This section records all those who were involved in the shared decision, either with the person or on behalf of the person.
This may be where the person is a child, does not have mental capacity or the decision is made in the person's best interest as a shared decision.
People involved in the\n decision may include family members, parents, legal guardians, carers, Legal Power of Attorney, Independent Mental Capacity Advocate.
", "concept": [{"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Name", "implementationGuidance": "The name of the person involved.", "description": "The name of the person involved.", "valueSets": "Free text", "valueDomain": [{"type": "string", "property": [{"maxLength": "70"}]}]}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Relationship", "implementationGuidance": "The relationship the person involved has to the person (subject of record), e.g. parent, foster parent, grandmother, family friend etc.", "description": "The relationship the person involved has to the person (subject of record), e.g. parent, foster parent, grandmother, family friend etc.
", "valueSets": "FHIR value set : - Person Relationship type
"}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Relationship type", "implementationGuidance": "Additional roles the person performs on behalf of the other (e.g. Carer, Legal Guardian, Next of Kin, Emergency Contact, Dependent, etc.)", "description": "Additional roles the person performs on behalf of the other (e.g. Carer, Legal Guardian, Next of Kin, Emergency Contact, Dependent, etc.)
", "valueSets": "Free text", "valueDomain": [{"type": "text", "property": [{"maxLength": "150"}]}]}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Role", "implementationGuidance": "The role of the person involved (if professional).", "description": "The role of the person involved (if professional).", "valueSets": "Alignment to the workforce dataset NHS Occupation codes primarily is advised. Where no code is available, free text may be used.
National Workforce Data Set (NWD) NHS Occupation codes are found here: -\u00a0https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/national-workforce-data-set-nwd-and-nhs-occupation-codes. To access the list of roles, download the 'NWD dataset specification' using the link on the page.
The Staff Groups and Job Roles are listed in the \u2018NWD Class & Codes Appendix\u2019 tab of the attached NWD Dataset from row 640. The 'Staff Group' and 'Job Role' segments are contained in one field named 'Job' which work together e.g. Staff Group = Nursing & Midwifery Registered and Job Role = Staff Nurse.
"}]}, {"type": "group", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "name": "Shared agenda setting", "implementationGuidance": "To minimise the recording burden on clinicians it is optional to record this field.\u201cAgenda 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 [are] key aspects of shared decision\n making.\u201d
\n
According to NHS England (see\u00a0https://www.england.nhs.uk/shared-decision-making/how-to-make-shared-decision-making-happen/supporting-and-empowering-individuals/):
\n
\"Agenda setting can help to ensure that the conversation focuses on the priorities - of both the professional and patient - so that the things that matter most are discussed and no one leaves feeling dissatisfied...This simple process can be triggered by a question at the start of the meeting or it can be started before the appointment itself -\n with patients asked to consider while they wait what they would like to discuss and to prepare their priority list.\"
To minimise the recording burden on clinicians it is optional to record this field.
\nThe aim of the collaborative shared agenda setting process is for the professional and patient to agree shared priorities and focus for the SDM conversation. The aspects brought to the discussion by both parties should be recorded i.e. the topics that they agreed to cover together. Good SDM practice requires that healthcare professionals actively seek out and\n record the patient's values, preferences and circumstances. Use of the 'patient agenda' and 'what matters to the person' fields should support this enquiry.
\nThe NICE guideline on Shared Decision Making (see\u00a0https://www.nice.org.uk/guidance/ng197) states:
\nIn 1.2.7:
\n\"Agree an \u2018agenda\u2019 at the start of each discussion to prioritise together what to discuss. Say how long the discussion will last.\"
\nThe NICE committee emphasised that:\u00a0\u201cAgenda 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 [are]\u00a0key aspects of shared decision making.\u201d In an SDM discussion with children, for example, the length of discussion is particularly important to maintain\n optimum focus throughout and so may require further appointments.
", "description": "A record of what the patient said was their agenda (talk topic(s)) for the appointment.", "valueSets": "Free text.", "valueDomain": [{"type": "text"}]}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "name": "Clinician agenda", "implementationGuidance": "To minimise the recording burden on clinicians it is optional to record this field.
\nThe aim of the collaborative shared agenda setting process is for the professional and patient to agree shared priorities and focus for the SDM conversation. The aspects brought to the discussion by both parties should be recorded i.e. the topics that they agreed to cover together. Good SDM practice requires that healthcare professionals actively seek out and\n record the patient's values, preferences and circumstances. Use of the 'patient agenda' and 'what matters to the person' fields should support this enquiry.
\nThe NICE guideline on Shared Decision Making (see\u00a0https://www.nice.org.uk/guidance/ng197) states:
\nIn 1.2.7:
\n\"Agree an \u2018agenda\u2019 at the start of each discussion to prioritise together what to discuss. Say how long the discussion will last.\"
\nThe NICE committee emphasised that:\u00a0
\n\u201cAgenda 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 [are]\u00a0key aspects of shared decision making.\u201d In an SDM discussion with children, for example, the length of discussion is particularly important to maintain optimum focus throughout and so may\n require further appointments.
", "description": "A record of the clinician's stated agenda (talk topic(s)) for the appointment.", "valueSets": "Free text.", "valueDomain": [{"type": "text"}]}]}, {"type": "item", "minimumMultiplicity": "1", "maximumMultiplicity": "1", "mro": "M", "name": "What matters to the person", "implementationGuidance": "Ideally this section will be used to record the key aspects of what the patient has told the clinician in the person's own words. For example, as part of recording the person's ideas the clinician may wish to elicit the patient's understanding of their condition or diagnosis.
\nThe General Medical Council (GMC) guidance on Decision Making and Consent (see\u00a0https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent) states in section 17:
\n\"You should try to find out what matters to patients about their health - their wishes and fears, what activities are important to their quality of life, both personally and professionally - so you can support them to assess the likely impact of the potential outcomes for each option.\"
\nIn section 18: \u201c
\nYou must seek to explore your patient\u2019s needs, values and priorities that influence their decision making, their concerns and preferences about the options and their expectations about what treatment or care could achieve.\"
\nIdeally, a completed About me record would be available to the clinician in advance to support this area of discussion.
\nAbout me supports sharing of information that the person thinks is important to share with professionals. This could include information about their needs, preferences, concerns and wishes.
\nThe About me standard is not part of the SDM record (it is a separate standard in its own right), but is considered important contextual information for the SDM conversation.\u00a0 For more detailed implementation guidance please look at the supporting documents at the following link: https://theprsb.org/standards/aboutme/\u00a0
\nFor children the NICE Guideline Babies, children and young people's experience of healthcare (https://www.nice.org.uk/guidance/ng204) states in 1.5.15 \"Assume that all children and young people have views and opinions about their own healthcare, and actively encourage them to express what matters to them...\"
\n ", "description": "A record to establish what matters to the person in the context of the decision to be made, which may include as appropriate:The SNOMED CT codes for this element are to be confirmed with NHS England.
\n
\n
The General Medical Council (GMC) Decision Making and Consent guidance\u00a0(see\u00a0https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent)\u00a0tells of 'very exceptional circumstances\u2019 where information is withheld or sharing delayed because it would cause the patient \u2018very serious harm\u2019 legal advice should be\n sought.
Where information sharing is delayed the guidance instructs practitioners to record \u2018the information [they] still need to share, [their] reasons for not sharing it now, and when it can be shared.\u2019\u00a0
For children the NICE Guideline Babies, children and young people's experience of healthcare (https://www.nice.org.uk/guidance/ng204) states in 1.5.2
\n\"Give all children and young people opportunities to express their opinions about their health needs independently, including:
\nasking them about the extent to which they want their parent or carer to be involved in their healthcare
offering to see them separately from their parents or carers for part of the consultation.\"
It maybe appropriate to record where information sharing was delayed until a private conversation could be held if requested by a child/ young person.\"
", "description": "Details of where information sharing with the person has been delayed.", "concept": [{"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Information still to share", "implementationGuidance": "Details of the information that still needs to be shared.", "description": "Details of the information that still needs to be shared.", "valueSets": "Free text.", "valueDomain": [{"type": "text"}]}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "Reasons for not sharing the information now", "implementationGuidance": "An account of the professional's reason(s) for not sharing the information with the person during the encounter", "description": "An account of the professional's reason(s) for not sharing the information with the person during the encounter", "valueSets": "Free text.", "valueDomain": [{"type": "text"}]}, {"type": "item", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "mro": "R", "name": "When the information can be shared", "implementationGuidance": "A explanation of what needs to happens so that the information can be shared.", "description": "A explanation of what needs to happens so that the information can be shared.", "valueSets": "Free text.", "valueDomain": [{"type": "text"}]}]}]}]}]}, {"type": "group", "minimumMultiplicity": "0", "maximumMultiplicity": "1", "name": "Post-discussion actions", "implementationGuidance": "\n\u201cOffer 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.\"
\n ", "description": "A record of the actions agreed to support the shared decision after the discussion. This should include: