ALL WALES SPECIALIST PALLIATIVE CARE DATASET WITH SUPPORT INFORMATION

ALL WALES SPECIALIST PALLIATIVE CARE DATASET WITH SUPPORT INFORMATION

Version 1.1

Version / Date / Status / Author / Change Summary / Distribution
V 0.1 / May 2010 / Draft / Wendy Jones / Updated to match DSCN / Rhian Owen,
Deborah Longman
V 0.2 / September 2010 / Draft / Wendy Jones / Updated definitions and added additional sections to support information / Rhian Owen,
Lynda Williams
V1 / 17th September / Final / Wendy Jones / Finalised in readiness for Data Set Implementation Workshops / Presented to Palliative Care Service at Consultants meeting and at Workshops across Wales
V1.1 / 1st October / Wendy Jones / Updated after feedback from Workshops / All Specialist Palliative Care Services in Wales

Author:Wendy Jones: Palliative Care Information Analyst [October 2010]

Document: All Wales Specialist Palliative Care Dataset with support informationPage 1 of 15

ALL WALES SPECIALIST PALLIATIVE CARE DATASET WITH SUPPORT INFORMATION

1. REGISTRATION / IDENTIFICATION OF PATIENT

2. LOCAL PATIENT IDENTIFIER

3. PATIENT NAME

4. PATIENT ADDRESS

5. DIAGNOSIS

6. REFERRAL

7. FIRST ASSESSMENT

8. ALLERGIES AND ADVERSE REACTIONS

8. DEATH

Author:Wendy Jones: Palliative Care Information Analyst [October 2010]

Document: All Wales Specialist Palliative Care Dataset with support informationPage 1 of 15

ALL WALES SPECIALIST PALLIATIVE CARE DATASET WITH SUPPORT INFORMATION

Data Item /

Reason for collection

/ Options / Support Information
1. REGISTRATION / IDENTIFICATION OF PATIENT
One per patient
1.1 / NHS number / To assistin the accurate identification of patients. / Canisc Label: NHS No.Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to minimize the possibility of duplicate patient registration and to support multi-provider care in one electronic casenote
Further use: used extensively on automatic generation of labels, letters and other documentation.
1.2 / Date of birth / To assistin the accurate identification of patients.
To enable age at referral to be established for analysis. / Canisc label: Date of Birth. Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to minimize the possibility of duplicate patient registration and to support multi-provider care in one electronic casenote
Used in PC DAW: with date of referral to calculate ‘age’ and ‘agerange’.
Further use:used extensively on automatic generation of labels, letters and other documentation. Usedto calculate age at referral for National Council for Palliative Care MDS
1.3 / Sex / To assistin the accurate identification of patients.
To enable analysis of referral by sex. /
  • Male
  • Female
  • Not specified
/ Canisc label: Sex. Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to minimize the possibility of duplicate patient registration and to support multi-provider care in one electronic casenote
Used in PC DAW:‘sex’
Further use:used on automatic generation of labels, casenote front page and other documentation.
Used for analysis of gender for National Council for Palliative Care MDS
Data Item /

Reason for collection

/ Options / Support Information
1. REGISTRATION / IDENTIFICATION OF PATIENT [continued]
1.4 / Name and address of GP practice / To enable the specialist palliative care service to contact the GP practice and share patient information.
To enable analysis of referral practice by GP practice. / Canisc labels: Current GP: GP: Address. Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to aid communication with the patient’s GP.
Used in PC DAW:‘gpname’ (surname and initials of GP); ‘gppractice’(practice code).
Further use: used in the automatic generation of GP letters and casenote front page.
1.5 / Ethnic Group / To enable analysis of referral by ethnic group to ensure an equitable service is being provided to the whole community. /
  • Any white background
  • Mixed white and black Caribbean
  • Mixed white and black African
  • Mixed white and Asian
  • Any other mixed background
  • Indian and British Indian
  • Pakistani or British Pakistani
  • Bangladeshi or British Bangladeshi
  • Any other Asian background (other than Chinese)
  • Black Caribbean or black British Caribbean
  • Black African or black British African
  • Any other black background
  • Chinese
  • Any other ethnic group
  • Not stated
/ Canisc label: Ethnic Group. Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to monitor service provision. The option should not be assumed by the user but must be provided by the patient. If the patient chooses not to give the information then ‘Not stated’ should be selected. If the patient has not yet been asked for the information then the data item should be left blank
Used in PC DAW: ‘ethnicgroup’
Further use: Used for analysis of ethnicity for National Council for Palliative Care MDS.
Future plans: An additional item has been added to the development portfolio for Canisc so that data items collected solely for Ethnicity Diversity(E&D) monitoring (including Ethnic Group) are removed from the clinical record and, so that the patient is not asked repeatedly, a ‘flag’ added to indicate that the patient has already been asked for the E&D information
Data Item /

Reason for collection

/ Options / Support Information
1. REGISTRATION / IDENTIFICATION OF PATIENT [continued]
1.6 / Religion or belief / To assist in the provision of holistic care for the patient if the patient informs the service of their religion or belief. / Canisc label: Religion. Location:Casenote: Patient Tab: Patient Details View
Data entry:necessary to record the patient’s religion or belief if the patient has chosen to give the information to assist in holistic care.
Further use:used on automatic generation of casenote front page and Ward List
1.7 / Preferred language (spoken) / To alert the service if a patient’s language is not English so that appropriate arrangements can be made to assist communication. / Canisc label: Pref. language. Location:Casenote: Patient Tab: Patient Details View
Data entry: optional to record the patient’s preferred spoken language to assist communication if that patient’s language is not English.
2. LOCAL PATIENT IDENTIFIER
One or more per patient
2.1 /

Case record number at an organisation or service

/ To assistin the accurate identification of patients.
To facilitate the location of patient information within other organisations caring for the patient. / Canisc label: Case Nos. Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to minimize the possibility of duplicate patient registration and to support multi-provider care in one electronic casenote
Used in PC DAW:‘crn’
Further use: used extensively on automatic generation of labels, letters and other documentation.
3. PATIENT NAME
One or more per patient
3.1 / Patient name(s) / To assistin the accurate identification of patients to avoid duplicate registration. For this purpose, any name by which the patient is (or has been) known should be able to be accessed. / Canisc labels: Preferred name; Surname; Forenames – First; Second; Third. Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to minimize the possibility of duplicate patient registration and to support multi-provider care in one electronic casenote
Further use: used extensively (with 3.2 Active name when indicated as active) on automatic generation of labels, letters and other documentation.
Data Item /

Reason for collection

/ Options / Support Information
3. PATIENT NAME [continued]
3.2 / Active name / To enable the specialist palliative care service to identify which is the name currently used by the patient. / Canisc label: No actual label: the patient’s active name is displayed by default on a white background. Inactive names display on a red background. Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to indicate which patient name to use in communication.
Further use:see 3.1 Patient name(s)
4. PATIENT ADDRESS
One or more per patient
4.1 / Patient address(es) / To assist in the accurate identification of patients to avoid duplicate registration. For this purpose, any address including postcode at which the patient is (or has) lived with the start and end dates where relevant should be able to beaccessed.
To provide evidence of prevalence to assist commissioning and equity of access across providers. / Canisc label: Premises; Street; Locality; PostTown; County; Postcode. Location: Casenote: Patient Tab: Patient Details View
Data entry: necessary to minimize the possibility of duplicate patient registration and to support multi-provider care in one electronic casenote
Used in PC DAW: ‘address’ (grouping of all elements) ‘posttown’ (PostTown);‘postcode’ (Postcode) at time of referral.
Further use: used extensively (with 4.2 Current address when ‘Current residence’, 4.3 Permanent or temporary and 4.4 Active or inactive when ‘Active’) on automatic generation of labels, letters and other documentation
4.2 / Current address / To indicate the address agreed with the patient at which the patient is currently residing to aid contact and communication. For this purpose, only one address can be current at a particular time. / Canisc label: Current residence. Location: Casenote: Patient Tab: Patient Details View
Data entry: necessary to aid contact and communication
Further use: see 4.1 Patient address(es)
Data Item /

Reason for collection

/ Options / Support Information
4. PATIENT ADDRESS [continued]
4.3 /

Permanent or temporary address

/ To show whether any address is permanent or temporary to avoid duplicate registration if the patient is residing at a temporary residence. / Canisc label: ‘Permanent address’ or ‘Temporary address’ as appropriate. Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to minimize the possibility of duplicate patient registration and to support multi-provider care in one electronic casenote
Further use: see 4.1 Patient address(es)
4.4 / Active or inactive address / To indicate whether any address is currently active i.e. could be used by the patient as a residence, to assist in accurate identification and prevent duplicate registration if the patient has moved residence.
For this purpose only one permanent address can be active at any one time: more than one temporary address can be active at any one time. / Canisc label: ‘Active’ or ‘Inactive’ as appropriate. Location: Casenote: Patient Tab: Patient Details View
Data entry:necessary to aid contact and communication
Further use: see 4.1 Patient address(es)
4.5 / Local Health Board / Toprovide data for planning as evidence of prevalence when used with numbers of patients in area and equity of services within LHB code area. / Canisc label: LHB. Location: Casenote: Patient Tab: Patient Details View.
Data entry:necessary to provide data for commissioning
Used in PC DAW: ‘lhb’
Data Item /

Reason for collection

/ Options / Support Information
5. DIAGNOSIS.
One or more per patient
5.1 /

Diagnosis

/ To identify the underlying condition as defined by the Primary Professional which has caused the specialist palliative care team to be involved.
To share the diagnosis with members of the specialist palliative care team
To inform other multidisciplinary teams of specialist palliative care team involvement for this condition
To allow analysis of caseload according to diagnosis.
To provide information on patterns of use of services according to diagnosis. / Read Code / Canisc label: Diagnosis.Location: Casenote: Referral Tab: Registration View.
Data entry:necessary to support multi-provider care in one electronic casenote and to analyse caseload and patterns of use of services by primary diagnosis
Used in PC DAW:‘diagnosis’: used to derive ‘diagsubclass’.
Further use: used extensively on automatic generation of casenote front page, Consultant Ward List and other clinical documentation.
Used to derivediagnosis for National Council for Palliative Care MDS
Data Item /

Reason for collection

/ Options / Support Information
6. REFERRAL
One or more per diagnosis
6.1 /

Source of specialist palliative care referral

/ To identify patterns of referral. /
  • Following an emergency admission
  • Primary Care: OOH
  • Primary Care: Community
  • Primary Care: Emergency
  • Another SPCT in the secondary/acute service
  • Planned non-SPCT in a secondary/acute service
  • Self-referral
  • Another SPCT non statutory
  • Other source of referral (will include referrals from Private Healthcare)
/ Canisc label: Source of Referral.Location:Referral and 1st Assessment screen accessed from Palliative Care Launch Page on Palliative Tab of Casenote.
Data entry:necessary to identify patterns of referral.The options are further described as follows
  • Following an emergency admission. Referred after an emergency admission to an acute hospital e.g. via A&E.
  • Primary Care: OOH. Referred from the patient’s Primary Care team outside normal working hours
  • Primary Care: Community. Referred from the patient’s Primary Care team during normal working hours and not as an emergency.
  • Primary Care: Emergency. Referred from the patient’s Primary Care team during normal working hours as an emergency i.e. the referral can not wait.
  • Another SPCT in the secondary/acute service. Referred from another SPCT in the NHS setting. This includes both hospital and community teams.
  • Planned non-SPCT in a secondary/acute service.
    Referred from a non-SPCT team providing planned care in the NHS secondary/acute hospital setting
  • Self-referral. The referral came from the patient or the patient’s relative, carer or friend.
  • Another SPCT non statutory. The referral came from a SPCT in the voluntary/non-NHS sector.
  • Other source of referral (will include referrals from Private Healthcare). The referral came from none of the options above.
Used in PC DAW: ‘referralsource’
Data Item /

Reason for collection

/ Options / Support Information
6. REFERRAL [continued]
6.2 /

Name of specialist palliative care team receiving referral

/ To identify the team giving care to the patient.
To enable analysis by specialist palliative care team.
To identify different specialist services involved in one individual’s care. / Canisc label: Provider. Location: Casenote: Referral Tab: Registration View.
Data entry:necessary to support multi-provider care in one electronic casenote. Automatically inserted from the user’s current Working Organisation at the Provider Details step of the Patient referral wizard.
Further use:used on automatic generation of casenote front page.
6.3 /

Primary professional name

/ To identify the health care professional ultimately responsible for patient care.
To assist communication across specialist services / Canisc label: Key professionals. Location: Casenote: Referral Tab: Registration View.
Data entry:necessary to identify the health care professional ultimately responsible for the patient’s care, to assist communication across services and to identify patients accessing care from consultant led services
Used in PC DAW: ‘staffcontact’ when ‘Referrals’ selected at ‘Data to include’ step.
Further use:used extensively on automatic generation of casenote front page, Consultant Ward Listand other clinical documentation.
Used together with Clinic Rules to restrict the booking of patients into selected clinics.
6.4 /

Primary professionaltype

/ To identify the professional type of the primary professional
To identify patients accessing care from a consultant led service. / Canisc label: No actual label: the patient’s type is recorded during the selection of 6.3 Primary professional name and stored in the Canisc database.
Data entry: necessary to identify patients accessing care from a consultant led service.
Data Item / Reason for collection / Options / Support Information
6. REFERRAL [continued]
6.5 /

Date of specialist palliative care referral

/ To identify patients accessing care from a consultant led service.
To establish the date on which the referrer first initiates referral to the specialist palliative care team.
To facilitate audit of responsiveness of service. / Canisc label: SPC Referral Date.Location: Referral and 1st Assessment screen accessed from Palliative Care Launch Page on Palliative Tab of Casenote.
Data entry:necessary to assist in audit of National Standards for Specialist Palliative Care Cancer Services 2005 (Standards 5.4 and 5.5). This should be the first point of referral from one of the following:
  • The date on the letter or form or fax from the referrer.
  • The date of admission to hospital/hospice in the case of patients coming in as emergencies
  • Date of verbal request
Used in PC DAW: ‘spc_refdate’. Used to derive ‘spc_refdate by week’ and ‘spc_refdate by month’. Used with 7.1 Date first assessed by the specialist palliative care team to calculate ‘delaydays’ which are the difference in days between 6.4 and 7.1 regardless of the day of the week or bank holidays.
Further use:used with 6.5 and 7.1 to determine whether 7.2 Reason for delay in being assessed is displayed on screen (see Data entry section of 7.2)
6.6 /

Priority of specialist palliative care referral as defined by referrer

/ To assist in monitoring patients referred to the specialist palliative care team for urgent review of uncontrolled symptoms.
To facilitate audit of responsiveness of service. /
  • Urgent referral for uncontrolled symptoms
  • Other
/ Canisc label: Priority of Referral. Location: Referral and 1st Assessment screen accessed from Palliative Care Launch Page on Palliative Tab of Casenote.
Data entry:necessary to assist in audit of National Standards for Specialist Palliative Care Cancer Services 2005 (Standards 5.4 and 5.5).
The priority should be as stated by the referrer for patients referred to the specialist palliative care team for urgent review of uncontrolled symptoms.
Used in PC DAW: ‘referralpriority’
Further use:used with 6.4 and 7.1 to determine whether 7.2 Reason for delay in being assessed is displayed on screen (see Data entry section of 7.2)
Data Item /

Reason for collection

/ Options / Support Information
7. FIRST ASSESSMENT
None or one per referral
7.1 / Date first assessed by a member of the specialist palliative care team / To facilitate audit of responsiveness of service. / Canisc label: First Assessed. Location: Referral and 1st Assessment screen accessed from Palliative Care Launch Page on Palliative Tab of Casenote.
Data entry:necessary to assist in audit of National Standards for Specialist Palliative Care Cancer Services 2005 (Standards 5.4 and 5.5).
The date recorded should be the first face to face contact to initiate the specialist assessment process (an assessment may require more than one face to face contact)
Used in PC DAW: ‘dateassessed’. Used to derive ‘dateassessed by week’ and ‘dateassessed by month’ Used with 6.4 Date of specialist palliative care referral to calculate ‘delaydays’ which are the difference in days between 6.4 and 7.1 regardless of the day of the week or bank holidays.
Further use:used with 6.4 and 6.5 to determine whether 7.2 Reason for delay in being assessed is displayed on screen (see Data entry section of 7.2)
Data Item / Reason for collection / Options / Support Information
7. FIRST ASSESSMENT [continued]
7.2 / Reason for delay in being assessed / To enable reflection on service provision and consider service developments when necessary. /
  • Patient choice
  • Clinical Reason
  • Logistic Reason
  • DNA - reason unspecified
  • Other, specify
  • Not known
[multiple responses possible] / Canisc label: SPC Referral Date. Location: Referral and 1st Assessment screen accessed from Palliative Care Launch Page on Palliative Tab of Casenote
Data entry:Requires completing when
a)6.5 Priority of Specialist Palliative Care Referral = ‘Urgent referral for uncontrolled symptoms’ and
b)there is a delay greater than 2 days between 6.4 Date of specialist palliative care referral and 7.1 Date first assessed by a member of the specialist palliative care team.
To describe the reason why a patient who was an urgent referral for uncontrolled symptoms was not first assessed within two days of the referral.
More than one option can be recorded
Necessary to assist in audit of National Standards for Specialist Palliative Care Cancer Services 2005 (Standards 5.4 and 5.5).
Used in PC DAW: ‘delayreason1’, ‘delayreason2’, ‘delayreason3’, ‘delayreason4’, ‘delayreason5’

Author:Wendy Jones: Palliative Care Information Analyst [October 2010]