NSW HIV, STI and HCV Minimum Data Set Data Dictionary

Version 2.4

NSW HIV, STI and HCV Minimum Data Set Data Dictionary – Version 2.4 1

Suggested citation: NSW Ministry of Health HIV, STI and HCV Minimum Data Set Data Dictionary, Sydney.

NSW MINISTRY OF HEALTH 73 Miller Street North Sydney NSW 2060 Tel: 02 9391 9000 Fax: 02 9391 9101 TTY: 02 9391 9900 www.health.nsw.gov.au

This work is copyright. It may be reproduced in whole or part for study or training purposes subject to the inclusion of an acknowledgment of the source. It may not be reproduced for commercial usage or sale. Reproduction for purposes other than those indicated above requires written permission from the NSW Ministry of Health.

© NSW Ministry of Health 2012

SHPN ISBN

Further copies of this document can be downloaded from the NSW Ministry of Health website: www.health.nsw.gov.au

Version Control Information

Version Status Contents & nature of Author Date modifications 1.2 Current NSW HIV/AIDS and Sexual AIDs/Infectious Diseases Jun 2005 Health MDS Data Dictionary Branch N/A Never Pilot HCV MDS NSW Hepatitis C MDS Mar 2009 published Advisory Committee 2.0 Draft First issue integrated with HIV- D. Fukunishi - Presented to Oct 2010 STI MDS data definitions the NSW Hepatitis C MDS Steering Committee 2.1 Draft Second issue incorporating NSW Metrics Group - Sep 2011 suggestions from NSW Metrics Improving HIV-STI MDS Group Consistency working group 2.2 Draft Minor changes in data elements NSW Metrics Group - Sep 2011 and document pages Improving HIV-STI MDS Consistency working group 2.3 Final draft HCV data elements NSW HCV Working Group / Dec 2011 improvements NSW HCV Advisory Committee 2.4 Final Business rules update NSW Metrics Group - May 2012 Improving HIV-STI MDS Consistency working group

Last Date Saved: 22/05/2012 1:30 PM Filename: HIV-STI-HCV MDS data dictionary vrs 2.4.doc

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Table of Contents

Section Page

Table of Contents ...... 3 Introduction ...... 4 Scope ...... 4 Guide for Use ...... 4 Data item format ...... 5 Abbreviations ...... 7 1. Data Record Concept ...... 8 1.1. Non-admitted patient occasion of service ...... 8 2. Activity Related Data Elements ...... 9 2.1. Principal service provided ...... 9 2.2. Session type ...... 12 2.3. Service provider type ...... 14 2.4. Service unit identifier ...... 16 3. Client/Patient Related Data Elements ...... 17 3.1. Aboriginal and Islander origin ...... 17 3.2. Age range ...... 19 3.3. Country of birth ...... 20 3.4. Interpreter required ...... 23 3.5. Postcode ...... 24 3.6. Preferred language ...... 25 3.7. Sex ...... 27 3.8. Transgender (extended option) ...... 28 3.9. Clinical trial (extended option) ...... 29 3.10. Co-infection (extended option) ...... 30 3.11. Injecting drug use risk (extended option) ...... 31 3.12. People living with HIV (extended option) ...... 32 3.13. People released from custodial settings (extended option) ...... 33 3.14. Presence of symptoms (extended option) ...... 34 3.15. Sex work risk (extended option) ...... 35 3.16. Sexual contact risk (extended option)...... 36 3.17. Status - HCV (extended option) ...... 37 Appendix A: Data domain for country of birth ...... 38 Appendix B: Data domain for preferred language ...... 42

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Introduction

This data dictionary documents the work done in relation to the NSW HIV/AIDS and Sexual Health Ambulatory Care Minimum Data Set (MDS) and the NSW Hepatitis C MDS prior to September 2011 and proposes common data structures that will allow future systems integration and use of common business rules for recording activity.

The NSW HIV/AIDS and Sexual Health Ambulatory Care MDS was developed in 2006 to collect state- wide outpatient activity data for HIV and sexual health facilities. This data is used in the NSW AIDS Resource Distribution Formula (AIDS-RDF) which is applied in the distribution of AIDS Program funding to public health facilities and in local services planning. The MDS is comprised of a small number of agreed items defined in a Data Dictionary and its core concept is the Non-admitted Patient Occasion of Service (NAPOOS) that is defined by the NSW Department of Health Reporting System (DOHRS) Activity Glossary of Terms 2004/2005.

The NSW Hepatitis C MDS was developed in 2009 with a patient-centred format that does not measure occasion of services. It records number of patients that were assessed for hepatitis C treatment, number of patients who initiated treatment and number of patients who completed treatment within the reporting period.

The current NSW AIDS-RDF model uses three data input elements: HIV, STI, and Needle and Syringe Program (NSP) data, but does not include priority populations because this data was not available. The inclusion of data items that enable identification of members of selected priority populations can potentially strengthen the NSW AIDS-RDF model. This data dictionary sets standard metrics for collecting priority populations data as proposed by the • NSW HIV/AIDS Strategy 2006-2009: Overview and Action Plan • NSW Sexually Transmissible Infections Strategy 2006-2009 • NSW Hepatitis C Strategy 2007-2009 • NSW HIV/AIDS, Sexually Transmissible Infections and Hepatitis C Strategies: Implementation Plan for Aboriginal People 2006-2009.

The data standards presented in this document have been developed through extensive consultation with a wide variety of stakeholders throughout the HIV/AIDS, sexually transmissible infection (STI) and hepatitis C virus (HCV) sectors, and it refers to existing data collections standards already in place, including: • NSW Health Data Dictionary for Client Registration Data Collection in the new Enterprise Data Warehouse version 2.0 – February 2008 • NSW Community Health and Outpatient Care Data Dictionary version 2.1 – February 2009 • NSW HIV/AIDS and Sexual Health Ambulatory Care Minimum Data Set Data Dictionary version 1.2 – June 2005 • NAP Data Collection Data Dictionary version 1.3 – September 2011

Scope

The scope of the NSW HIV, STI and HCV MDS covers clinical and counselling activities of specialist HIV-STI-HCV treatment and care provided in outpatient care settings. At this stage, health promotion activities are not fully-defined.

Guide for Use

This document should be used to guide the development of new systems, alternative reporting tools (such as paper forms) and data extracts for reporting to NSW Health.

It is essential that all classifications used in computer systems map exactly to the standards and category definitions described in this document.

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Data item format

Each data item is described in terms of its defining characteristics and its physical representation. In addition to this, certain administrative information is provided to inform users of the sources and the currency of the version of the individual item. The components included under these section headings are based on the National Health Data Dictionary (NHDD) standard, as described below:

Defining Characteristics Physical name Suggested variable name. Definition A statement that expresses the essential nature of a data element and its differentiation from all other data elements. Data element type Data elements in this dictionary are of one of four types Data Concept - a concept which can be represented in the form of a data element, described independently of any particular representation. For example, hospital 'admission' is a process, which does not have any particular representation of its own, except through data elements such as 'admission date', 'mode of admission' etc. Data Element – a unit of data for which the definition, identification, representation and permissible values are specified by means of a set of attributes. Derived Data Element – a data element whose values are derived by calculation from the values of other data elements. For example the data element ‘length of stay’ is derived by calculating the number of days from the ‘admission date’ to the ‘separation date’ less the number of ’total leave days’. Composite Data Element – a data element whose values represent the grouping of the values of other data elements in a specified order. Scope Defines the coverage of the data item by sector: HIV/AIDS, sexual health and hepatitis C (HCV) plus if it is a mandatory item or optional collection to a specific sector – defined as ‘Extended option for’ - in this case, data item still need to be exported, but can go with domain ‘not/applicable’. Justification The reason for collecting this data element.

Representation Data type The type of symbol or character, or other designation used to represent the data element. For example numeric, alphanumeric, alphabetic or integer. Form Describes whether the valid values for the data item take the form of a code set, free text. If the form is described as “Code” the relevant code set or sets will be specified in the Domain section. Representational A generic example of what the data element should look like in the unit layout record. For example, dates should be represented in the format of DDMMYYYY where DD represents, the day, MM represents the month, and YYYY represents the four-digit numeric for the year. “N” is used to represent numeric values and “A” is used to represent alphabetic and alphanumeric values (the Data 6 Type indicates whether it is alphabetic or alphanumeric). Minimum size The minimum and maximum number of characters allowable to represent the data element. A minimum value may not always be present in the case Maximum size of composite items, where certain elements are not mandatory.

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Data Domain The set of possible values for the data item. This may take the form of a code set, or a description of the possible values. Domain values are only specified where size of the code set is small enough to be reasonably reproduced in the document. In other instances the domain may be indicated by reference to a source document, such as the set of postcodes for produced by Australia Post. Guide for use These are comments designed to assist in further defining aspects of the data domain.

Administration Item version This is the version number of the individual data element in this data dictionary. The version number may differ from the version number of the NSW HDD publication, as data elements may be revised independently of the periodic review of the document. Effective date This is the date from which that particular version of the data item comes into effect, and may be used. Source document(s) Documents listed here have been used as references when designing the specified item. Source The name of the organisation(s) that developed the source document(s) or organisation(s) provided advice on the data item. Related to The name of the data item from the source document that relates to the specified item.

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Abbreviations

The table below shows descriptions of abbreviations that may be used throughout this document.

Abbreviation Description ABS Australian Bureau of Statistics AIDS Acquired immunodeficiency syndrome ANZSCO Australian and New Zealand standard classification of occupations ASCL Australian standard classification of languages AVT Antiviral therapy CHOC Community health and outpatient care CHOCIP Community health and outpatient care information project DOHRS NSW Department of Health reporting system HCV Hepatitis C virus HIV Human immunodeficiency virus LHD Local health district MDS Minimum data set NAPOOS Non-admitted patient occasion of services Nec Not elsewhere classified Nfd Not further defined NHDD National health data dictionary NSP Needle and syringe program NSW New South Wales NSW HDD NSW Health data dictionary OS Overseas OT Overseas territory PCR Polymerase chain reaction RDF Resource distribution formula SACC Standard Australian classification of countries STI Sexually transmissible infection SVR Sustained virological response

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1. Data Record Concept

1.1. Non-admitted patient occasion of service

Defining Characteristics Physical name non_admitted_occasion_of_service Definition A Non-admitted Patient Occasion of Service (NAPOOS) is a measure of the output for the part of the public health system that provides health care services to non-admitted patients. A non-admitted patient or client of a health service facility is one who receives a service without undergoing a formal admission process. An occasion of service is defined as: Any examination, consultation, treatment or other service provided by a health service provider to a patient on each occasion such service is provided. Each diagnostic test or simultaneous set of related tests for the one patient consists of one occasion of service. Data element type Data concept Scope Community Health and Outpatient Care. HIV/AIDS, sexual health and HCV. Justification Required to define the base unit of reporting activities to this data collection. Representation Data type N/A (data concept) Form Representational layout Minimum size Maximum size Data domain Guide for use

Administrative Information Item Version 1.0 Effective date 1 January 2008 Source document(s) NSW Department of Health Reporting System (DOHRS) Activity Glossary of Terms, 2004/2005 Source NSW Ministry of Health organisation(s) Related to Service event (concept) from the Community Health and Outpatient Care Information Project data dictionary

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2. Activity Related Data Elements

2.1. Principal service provided

Defining Characteristics Physical name principal_service_provided Definition Any confirmed diagnosed condition from the list (including a new episode of a previously diagnosed condition) treated or managed during this service contact. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification Required to interpret the presenting issue recorded for the occasion of service. Provides the basis for analysis of service usage and monitoring of specific conditions. Representation Data type Numeric Form Code Representational NN layout Minimum size 1 Maximum size 2

Data domain 1. HIV/AIDS 2. Syphilis 3. Chlamydia 4. Gonorrhoea 5. Herpes Simplex Virus 6. Human Papilloma Virus 7. Trichomoniasis 8. HIV/AIDS and another condition(s) specified above 9. HIV/AIDS and viral hepatitis 10. Other multiple conditions specified above 11. Triage (previous MDS: screening / testing / results) 12. Vaccination 13. HIV Post Exposure Prophylaxis 14. Other STI 15. Not elsewhere classified

16. Reserved to facilities for local use to 29. Reserved to facilities for local use

31. HIV only testing / negative results 32. STI only testing / negative results 33. HCV only testing / negative results 39. Combination of HIV, STI or HCV testing / negative results

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50. Provision of HCV RNA positive 51. Initial assessment for HCV AVT treatment 52. HCV AVT treatment 53. HCV AVT post-treatment 54. Managed not on treatment: HCV related cirrhosis - compensated 55. Managed not on treatment: HCV related cirrhosis - de-compensated 56. Managed not on treatment: HCV related hepatocellular carcinoma 57. Managed not on treatment: HCV related liver transplant 58. Managed not on treatment: other 59. Transfer of care / follow-up to GPs

60. Reserved to hepatitis B related activities to 69. Reserved to hepatitis B related activities

80. Reserved to prevention and health promotion related activities to 89. Reserved to prevention and health promotion related activities

Guide for use Collect at each service provided occasion. Code use: 1-7 Treatment or management (including psychosocial and medical care) of the listed condition alone 8 Treatment or management (including psychosocial and medical care) of any multiple conditions from those listed in 2-7 where HIV/AIDS is one of the conditions 9 Treatment or management (including psychosocial and medical care) of viral hepatitis (B or C) and HIV 10 Treatment or management (including psychosocial and medical care) of any multiple conditions from those listed in 2-7 where HIV/AIDS is not one of the conditions 11 Triage (where this does not include treatment or management of a condition) and not provision of results via triage consult captured by 31, 32, 33 or 39. 12 Vaccinations for any STI or HIV related condition (eg. Hep B & Hep A vaccine, Pneumovax or Fluvax for HIV+ve people). 13 All services provided in conjunction with the provision of HIV Post Exposure Prophylaxis. PEP assessment to non eligible clients should be coded as 31-39 depending on what is tested for not 13. Follow-up visits for clients on PEP should be coded as 13. 14 Treatment or management (including psychosocial and medical care) of any other diagnosed sexually transmitted infection (eg. MG, NGU, MCV, pubic lice, chancroid, donovanosis but not BV or Candida). 15 Any other service not elsewhere classified. (This item is included to facilitate identification of missing items) 16-29 Codes reserved to local use

31 HIV only testing or provision of negative results (PSP 1 should be used if positive results). Pregnancy related testing, contraception information/assessment and pap smears are excluded and should be coded as a 15 if done in the absence of STI/HIV testing.

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32 STI only testing or provision of negative results (another PSP needs to be used if positive results). Pregnancy related testing, contraception information/assessment and pap smears are excluded and should be coded as a 15 if done in the absence of STI/HIV testing. 33 HCV only testing or provision of RNA negative test results (PSP 51 should be used if positive results) 39 Combination of HIV, STI or HCV tests or provision of negative results. Pregnancy related testing, contraception information/assessment and pap smears are excluded and should be coded as a 15 if done in the absence of STI/HIV testing.

50 Provision of HCV RNA positive test result activities 51 HCV related activities to assess the patient suitability or non-suitability for HCV AVT treatment (including ultrasound, fibroscan, biopsy electrocardiogram, mental health) 52 HCV AVT treatment related activities (including psychosocial and medical care associated with being on AVT) 53 HCV AVT post-treatment related activities (standard 6 months, or varies by case until outcome defined) 54 Management of HCV related cirrhosis - compensated (may include HCC screening) 55 Management of HCV related cirrhosis - de-compensated (may include HCC screening) 56 Management of HCV related hepatocellular carcinoma 57 Management of HCV related liver transplant 58 Management of HCV related conditions not related to AVT that are not covered by PSPs 54-57, including cases when - Patients who are assessed as not suitable for AVT or waiting for treatment - Patients who are non responders and relapsers who are no longer suitable or chose not to be assessed for retreatment for AVT but require further management of related conditions 59 Clinical activity related to transfer of care or follow-up to GPs

60-69 Codes reserved to hepatitis B related activities 80-89 Codes reserved to health promotion related activities

Administrative Information Item Version 1.5 Effective date 8 December 2011 Source document(s) NSW HIV/AIDS and Sexual Health Ambulatory Care Minimum Data Set and Data Dictionary Source NSW Ministry of Health organisation(s) Related to Clinical code set for presenting issue from the Community Health and Outpatient Care Information Project data dictionary

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2.2. Session type Defining Characteristics Physical name session_type Definition The method that services are being delivered to the client(s) or other person(s). Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification This data element will facilitate an understanding of patterns in the methods of service delivery. It will also assist in understanding difference between service delivery models of care. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Proposed MDS Previous MDS Code Code descriptive terms Code Code descriptive terms 1 Face-to-face 1 Individual 2 Tele-health 3 Phone/letter/e-mail/sms-in 4 Phone/letter/e-mail/sms-out 2 Non face-to-face 5 Case conference 6 Case management/planning 7 Transport 8 Contact tracing 9 Group

Guide for use Collect at each service provided occasion. Code use: 1 Service delivery method that involves face-to-face contact with client 2 Service delivery method used when client and service provider are not in the same physical and communicating via tele-health. A single NAPOOS is counted at each facility participating in the link if a service provider is accompanying the patient in the remote site 3 Service delivery method used when client contacts service by telephone or by writing (e-mail, letter or SMS) involving significant clinical care with content provided recorded in the client’s record or in a log of services. It excludes booking of appointments 4 Service delivery method used when service provider contacts client or client’s carer by telephone or by writing (e-mail, letter or SMS (excluding SMS-reminders totally automated by a computer system) involving significant clinical care with content provided recorded in the client’s record or in a log of services 5 A case conference is held to ensure that patient’s multidisciplinary care

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needs are met through a planned and coordinated approach. A single NAPOOS should be recorded per client discussed by each service provider who has direct involvement in their care (have a task/ outcome to achieve) and therefore associated with a note in the client’s record. A minimum of three care providers are necessary to be involved to be considered a case conference, and the process should include: discussing a patient’s history; identifying the patient’s multidisciplinary care needs; identifying outcomes to be achieved by each team member; identifying tasks that need to be undertaken to achieve these outcomes allocating those tasks to members of the case conference team; and assessing whether previously identified outcomes have been achieved. 6 A single NAPOOS should be recorded by the case manager per individual client with complex needs that requires a case management/ planning activity related to the development, monitoring and review of individual case/service plans, as well as organisational and case coordination activities associated with service delivery to the client. While these activities will not involve direct client contact, they should be directly related to the planning and delivery of services to an individual client and should be documented in the individual client’s notes. Case management/ planning can be delivered via phone 7 A single NAPOOS should be recorded by each direction when a client is transported by a service provider to or from a health care appointment. It excludes transportation of the service provider to or from a facility or outreach point 8 A single NAPOOS should be recorded per individual contacted by contact tracing - process of identifying the relevant contacts of a person with an infectious disease (index patient) and ensuring that they are aware of their exposure. For STIs, relevant contacts include those with whom the index patient has had sex during the infectious period as well as babies of infected mothers. For blood-borne infections such as HIV, hepatitis B and C, needle-sharing contacts and transfusion recipients, as well as those who may have been accidentally exposed to blood by other means, also need to be traced. 9 A group service is provided when a group of clients who are not members of the same family (or carers) receive any health care service(s) directly from a service provider and a record is made of the occasion documenting the nature of the service(s) and the number of participants. It excludes cases when members of a group of clients receive an individual service and details of that service are noted on the individual’s record file. A single NAPOOS should be recorded per group session participant. Where multiple methods of service delivery are used for the same occasion of service, record session type according to the following hierarchy: • Face-to-face • Tele-health • Non face-to-face category that required more time Administrative Information Item Version 1.1 Effective date 1 October 2011 Source document(s) NSW HIV/AIDS and Sexual Health Ambulatory Care Minimum Data Set and Data Dictionary Source NSW Ministry of Health organisation(s) Related to Community Health and Outpatient Care Information Project - service contact mode and WebNAP - modality of care

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2.3. Service provider type

Defining Characteristics Physical name service_provider_type Definition The specialty or discipline of the health professional(s) involved with the service provided. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification This data element is needed to provide information about the nature of the outpatient service that is being delivered. It also provides information to support any subsequent studies in models of services delivery. Representation Data type Numeric Form Code Representational NNNNNN layout Minimum size 1 Maximum size 6*

Data domain* Proposed MDS Previous MDS Code Code descriptive terms Code Code descriptive terms 253 Medical Practitioners 1 Medical 2544 Nurses 2 Nursing 2515 Pharmacists (not in use) 3 Pharmacy (not in use) 2511 Dietitians 4 All other including allied health 2519 Health Promotion Professionals 2523 Dental Practitioners 2524 Occupational Therapists 2721 Counsellors 2723 Psychologists 2724 Interpreters 2725 Social Workers 4115 Aboriginal Health Workers 4117 Welfare Support Workers 5999 Not elsewhere classified Proposed MDS codes are from the Australian and New Zealand Standard Classification of Occupations, First Edition, ANZSCO, 2006.

Guide for use The ‘discipline of individual service provider’ should be recorded for all health professionals involved in the occasion of service. Where an individual health service provider is working in a position with duties or roles that do not match their specific qualification, they are to be classified to the discipline that reflects the duties and role of the position to which they have been appointed at the time of the service event.

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For example, if a person who is qualified as a registered nurse is appointed to the position/role of “counsellor”, his/her discipline should be classified as “counsellor”, not a nurse. * The NSW HIV/AIDS and Sexual Health Ambulatory Care Minimum Data Set Data Dictionary version 1.2 has codes with only one digit. Data domain was adapted to keep compatibility with the historical data from the NSW HIV/AIDS and Sexual Health Ambulatory Care Minimum Data Set and Data Dictionary

Administrative Information Item Version 1.1 Effective date 1 October 2011 Source NSW HIV/AIDS and Sexual Health Ambulatory Care Minimum Data Set and document(s) Data Dictionary Source NSW Ministry of Health organisation(s) Related to Community Health and Outpatient Care Information Project - service provider discipline

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2.4. Service unit identifier

Defining Characteristics Physical name service_unit_identifier Definition A unique identifier within NSW Health assigned to a service unit to distinguish it from other service units. Data element type Date element Scope HIV/AIDS, sexual health and HCV Justification This identifier will be a unique identifier for an establishment / reporting entity. Required to identify the service unit that was responsible for recording, reporting and delivering the service to the client. It will be used to group data for summary level statistics. It is also used to return activity and error reports back to the source. Representation Data type Alphanumeric* Form Code Representational A(20) layout Minimum size 1 Maximum size 20

Data domain* Guide for use Service unit identifiers have to be registered with NSW Health to ensure uniqueness across the state. * The NSW HIV/AIDS and Sexual Health Ambulatory Care Minimum Data Set and Data Dictionary was using a 5-digit numeric code

Administrative Information Item Version 1.1 Effective date 1 October 2011 Source document(s) Community Health and Outpatient Care Information Project Source NSW Ministry of Health organisation(s) Related to Establishment identifier from NSW HIV/AIDS and Sexual Health Ambulatory Care Minimum Data Set and Data Dictionary

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3. Client/Patient Related Data Elements

3.1. Aboriginal and Torres Strait Islander origin

Defining Characteristics Physical name aboriginal_and_torres_strait_islander_origin Definition An indication of whether the person is of Aboriginal or Torres Strait Islander origin. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification Given the gross inequities in health status between indigenous and non- indigenous peoples in Australia, the size of the Aboriginal and Torres Strait Islander populations and their historical and political context, there is a strong case for ensuring that information on Aboriginal and Torres Strait Islander origin is collected for planning and service delivery purposes and for monitoring the health of these people.

Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1 Data domain Code Code descriptive term 1 Aboriginal but not Torres Strait Islander Origin 2 Torres Strait Islander but not Aboriginal Origin 3 Both Aboriginal and Torres Strait Islander Origin 4 Neither Aboriginal nor Torres Strait Islander Origin 9 Unknown

Guide for use Staff should be clear that this item is a client's self-assessment of Aboriginal or Torres Strait Islander origin or descent and should be asked of everyone. In regard to sensitivity in asking or being asked the question, staff and the general public should be encouraged to understand that the question is asked because it is known that people of Aboriginal and Torres Strait Islander origin have poorer health and greater health service needs and the need to rectify the situation is urgent. The acronym 'ATSI' should not be used as it is offensive to many Aboriginal or Torres Strait Islander people. However, where systems cannot display the full field label of 'Aboriginal and Torres Strait Islander origin' due to space issues on the system/form, 'Aboriginality' may be used as the field label. Staff should be guided to ensure that the label 'Aboriginality' in this context means and refers to 'Aboriginal and Torres Strait Islander origin'. The term 'Aboriginality' is not a data element, nor should it be included as one of the values in the data domain. This element is a fixed but 'updateable' person attribute that should allow changes to amend past records.

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It is not acceptable to guess a person's indigenous origin by their appearance or name. The procedure for coding multiple responses on a form is as follows:

• If the respondent marks 'No' and either 'Aboriginal' or 'Torres Strait Islander' then the response should be coded to either Aboriginal or Torres Strait Islander origin as indicated (ie, disregard the 'No' response). • If the respondent marks both the 'Aboriginal' and the 'Torres Strait Islander' boxes, code to 'Aboriginal and Torres Strait Islander origin'. • If the respondent marks all three boxes - 'No', 'Aboriginal' and 'Torres Strait Islander', code to 'Aboriginal and Torres Strait Islander origin' (ie disregard the 'No' response). For reporting purposes, responses type 'Declined to respond' are to be mapped to code 9. For further information refer to: • NSW Health Circular 2000/38 'Principles for Recording Aboriginal and Torres Strait Islander Origin Information of Clients and Clients'. • 'Collecting Client Registration Information Training Program' (Aboriginal Health Information Strategy Unit, NSW Health, 2003).

Administrative Information Item Version 1.0 Effective date 1 January 2008 Source document(s) NSW Health Data Dictionary Version 1.2 Community Health and Outpatient Care Information Project Source NSW Ministry of Health organisation(s) Related to Aboriginal and Torres Strait Islander

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3.2. Age range

Defining Characteristics Physical name age_range Definition Five-year age range of the client Data element type Derived data element Scope HIV/AIDS, sexual health and HCV Justification Required for demographic analysis.

Representation Data type Numeric Form Code Representational NN layout Minimum size 1 Maximum size 2

Data domain Code Code descriptive terms 1 Less than 15 years 2 15-19 years 3 20-24 years 4 25-29 years 5 30-34 years 6 35-39 years 7 40-44 years 8 45-49 years 9 50-54 years 10 55-59 years 11 60-64 years 12 65 years and over

Guide for use Age range at service visit. If range category is unknown, an estimate should be made.

Administrative Information Item Version 1.0 Effective date 1998 Source document(s) Australian Community Based Health Services Codeset, ISBN 0731340574 Source NSW Ministry of Health organisation(s) Related to Age range

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3.3. Country of birth

Defining Characteristics Physical name country_of_birth Definition The country in which the person was born. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification This information is important in the study of access to services by different population sub-groups. Country of birth is the most easily collected and

consistently reported of possible data items. It provides a link between the Census of Population and Housing, other ABS statistics and regional data collections. Country of birth can be used in conjunction with other data elements such as preferred language to derive more sophisticated measures of access to services by different population sub-groups and may help in identifying population sub-groups at increased risk of disease.

Representation Data type Numeric Form Code Representational NNNN layout Minimum size 4 Maximum size 4 Data domain Standard Australian Classification of Countries (SACC) 1998 (modified) (see below). See Appendix B for country of birth data domains. Guide for use A country, even if it comprises other discrete political entities such as states, is treated as a single unit for all data domain purposes. Parts of a political entity are not included in different groups. Thus, Hawaii is included as part of the identified country United States of America despite being geographically close to and having similar social and cultural characteristics as the units classified to Polynesia. Countries as included in this ABS classification include: • Fully independent countries (sovereign nations states); • Administrative subdivisions of the United Kingdom; • External territories and dependencies of independent countries; • Units which are recognised geographic areas, the ownership or control of which is in dispute, e.g. Gaza Strip and West Bank; and • Residual categories (not elsewhere classified) comprised of geographic areas which are not separately identified in the classification and which are not parts of one of the separately identified base-level units. Within the Standard Australian Classification of Countries (SACC) 1998 the Australian Bureau of Statistics maintains a mapping between this 4 digit level classification and broader numeric classifications and an alphabetic classification. Where the Country of Birth of a person no longer exists, attempts should be made to code to firstly the new name, then to the higher level geographic region. For example, a response of “Indochina” would need further clarification to code to Cambodia (5102), Laos (5103) or Viet Nam (5105). If none is forthcoming, code to Asia, nfd (0917).

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Where neither option is possible, code to “Not elsewhere classified”. Where a country changes names without changing its borders, responses are coded to the new country name. For example, Zaire = Congo, Democratic Republic of (9108); Rhodesia = Zimbabwe (9232); Basutoland = Lesotho (9211). In cases where a country has been absorbed into a larger country, responses will be coded to the country it now lies within. For example, East Germany/West Germany = Germany (2304); North Vietnam / South Vietnam = Viet Nam (5105); Tibet = China (6101). Where a country has split into several separate nations, and it is not possible to identify which specific current nation the response refers to, the response is coded to the higher level geographic region. Guides for specific cases are described as follows: Czechoslovakia: Where there is insufficient information to classify the country to either the Czech Republic (3302) or Slovakia (3311), code to Europe, nfd (0911). USSR: Where there is insufficient information to classify the USSR to any of its successor states (i.e. Russia, Georgia, Ukraine, etc), code to Not Elsewhere Classified (0002). Korea: If a response of “Korea” is received, and it is not possible to classify to either North Korea (6202) or South Korea (6203), code to Asia, nfd (0917). The Former Yugoslavia: The following codes are to be used for the former constituent members of the Yugoslav Republic: 3202 – Bosnia and Herzegovina; 3204 – Croatia; 3206 – Former Yugoslav Republic of Macedonia (Macedonia); 3213 – Serbia and Montenegro (Montenegro, Serbia, the former Yugoslavia and Yugoslavia). The country “Former Yugoslav Republic of Macedonia” is a separate entity, and must not be used as the generic value for Yugoslavia, or the former Yugoslavia. Palestine: When a response of “Palestine” is given, an attempt should be made to ascertain whether the person is referring to territory within the State of Israel (4205), or to territories within the West Bank or Gaza Strip (4202), and coded appropriately. If no other information is available, code to Asia, nfd (0917). Australian External Territories, Nec (1199): This value is to be used solely for: The Ashmore and Cartier Islands; Heard Island and the McDonald Islands; Christmas Island. Do not code the Cocos (Keeling) Islands here – they should be coded to Australia (1101). Norfolk Island has its own code (1102). Nec and Nfd: These categories should only be used when a person is unable to provide more specific information about the country of birth. Regional codes should be used in preference to Inadequately described (0000) or Not Elsewhere Classified (0002), where possible. However, these must always be referred back to the person for further clarification at the first available opportunity. Africa, nfd (0918); Americas, nfd (8000); Asia, nfd (0917); Europe, nfd (0911); Oceania and Antarctica, nfd (1000); Polynesia (excludes Hawaii), nec (1599). Africa may be further broken down into North Africa, nec (4199) or Southern and East Africa, nec (9299). America may be further broken down into South America, nec (8299). Central America, nfd is to be coded to Americas, nfd.

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Administrative Information Item Version 1.0 Effective date 1 January 2008 Source document(s) NSW Mental Health Data Dictionary Version 3.0 National Health Data Dictionary Version 12.0 NSW Health Data Dictionary Version 1.2 Community Health and Outpatient Care Information Project Source NSW Ministry of Health organisation(s) Australian Institute of Health and Welfare Related to Country of birth

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3.4. Interpreter required

Defining Characteristics Physical name interpreter_required Definition An indicator that the client requires the services of an interpreter. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification This data element will facilitate service delivery for non-English speaking clients and will assist in planning multilingual services.

Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1 Data domain

Code Code descriptive terms 1 Interpreter required 2 Interpreter not required 9 Unknown

Guide for use Assign ‘interpreter required’ if any one of the client, client’s representative or the service provider perceives that an interpreter is required. ‘Interpreter required’ is a concept associated with the client/patient, rather than with individual service events. The presence of an interpreter at the service event will be separately recorded in the ‘discipline of individual service provider(s)’ data element. For further information about situations in which interpreters must be used see NSW Health Policy Directive PD2006_053 Interpreters - Standard Procedures for Working with Health Care Interpreters.

Administrative Information Item Version 1.0 Effective date 1 January 2008 Source document(s) Community Health and Outpatient Care Information Project Source NSW Ministry of Health organisation(s) Related to Interpreter required

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3.5. Postcode

Defining Characteristics Physical name postcode Definition The numeric descriptor for a postal delivery area assigned to a locality, suburb or place. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification Required for analysis of service utilisation by geographic areas.

Representation Data type Alphanumeric Form Code Representational A(12) layout Minimum size 0 Maximum size 12 Data domain

Code Code descriptive Term 9998 No Fixed Address 9999 Australia Not known / No further information available Blank Overseas Not known / Not stated

Guide for use The field size is set to 12 characters to allow for the recording of overseas postcodes. For Australian localities, postcode must be a valid Australia Post numeric postal code.

Administrative Information Item Version 1.0 Effective date 1 January 2008 Source document(s) NSW Health Data Dictionary version 1.2 Source NSW Ministry of Health organisation(s) Related to Postcode

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3.6. Preferred language

Defining Characteristics Physical name preferred_language Definition The language (including ) most preferred by the person for communication. This may be a language other than English even where the person can speak fluent English. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification Information on preferred language assists in the planning and provision of multilingual services and facilitates program and service delivery for speakers of languages other than English. Language data is used for policy and planning purposes related to the location and development of educational programs and campaigns, the provision of health care services by both service providers and the organisation representing particular language or ethnic groups. Language data assists in the assignment of interpreters, translators and care providers to health care providers. Language data will, more generally, be a useful tool in social research and will provide a stable underpinning for related concepts such as ethnicity, ancestry, etc. Most importantly, it is a requirement that clients give informed consent (for disclosure of information, treatment options, election choice) and thus it is important that the client is presented with options in a language that he/she can understand.

Representation Data type Numeric Form Code Representational NNNN layout Minimum size 4 Maximum size 4 Data domain Australian Standard Classification of Languages (ASCL) 1997 ABS Cat No 1267.0

See Appendix B for preferred language data domains Guide for use The scope of the classification is all languages currently spoken in the world. In practice, only those languages that have significant numbers of speakers in Australia are separately identified in the classification structure. However, all languages currently spoken in the world are covered, notionally being included in the most appropriate category of the classification. The issue of extinct or dead languages was not specifically addressed when developing the classification. If people speak extinct or dead languages for scholastic, religious or other purposes they are notionally included in the classification. If sufficient numbers of speak an extinct or dead language, for whatever reason, it is separately identified in the classification, as is the case with .

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The classification also includes invented and sign languages as many statistical and administrative applications need to accommodate the whole range of responses to questions on languages used. 'Languages' which are not generally used as a means of communication between people, for example computer languages, are excluded from the classification. Where the following responses are received, code to the following: • Bantu – 9299 (African Languages, nec); • Belgian – 1401 (Netherlandic); • Dari – 4103 (Persian); • Dutch – 1401 (Netherlandic); • Ethiopian – 9299 (African Languages, nec); • Flemish – 1401 (Netherlandic); • New Guinea Native – 9501 (); • English – 9401 (Tok Pisin); • Serbo-Croatian – 3999 (Other Eastern European Languages, nec); • Sudanese – 9299 (African Languages, nec).

Administrative Information Item Version 1.0 Effective date 1 January 2008 Source document(s) NSW Health Data Dictionary Version 1.2 Source NSW Ministry of Health organisation(s) Related to Preferred language

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3.7. Sex

Defining Characteristics Physical name sex Definition The sex of the client Data element type: Data element Scope HIV/AIDS, sexual health and HCV Justification There are known differences of the impact of disease by sex, and thus those patterns will need to be analysed and utilised in program evaluation. This item will also support the analysis of service access and population health patterns by sex.

Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1 Data domain

Code Code descriptive terms 1 Male 2 Female 3 Indeterminate 9 Unknown

Guide for use Collect at client intake/admission. The term 'sex' refers to the biological difference between males and females, while the term 'gender' refers to the socially expected and perceived dimensions of behaviour associated with males and females - masculinity and femininity. The correct terminology is sex. Information should be collected for transsexuals and people with transgender issues should be treated in the same manner. To avoid problems with edits, transsexuals undergoing sex change operations should have their sex at the time of admission or service contact recorded. An 'Indeterminate' sex category may be necessary for situations such as the classification of perinatal statistics when it is not possible for the sex to be determined.

Administrative Information Item Version 1.0 Effective date 1 January 2008 Source document(s) NSW Health Data Dictionary Version 1.2 Source NSW Ministry of Health organisation(s) Related to Sex

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3.8. Transgender (extended option)

Defining Characteristics Physical name transgender Definition An indicator of transgender status. Data element type Data element Scope HIV/AIDS and sexual health. Extended option for HCV Justification Required for analysis of transgender client usage. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 No 2 Yes 8 Not applicable 9 Unknown

Guide for use Collect at client intake/admission. Assign ‘yes’ to indicate transgender. A transgender person is one who: - Assumes characteristics of the opposite sex by medical intervention or other means - Identifies him/herself as a member of the opposite sex, or - Attempts to be or indentifies as transgender.

Administrative Information Item Version 1.1 Effective date 21 November 2011 Source document(s) NSW Health Sexual Health Minimum Data Set Data Dictionary Version 2.0 Source NSW Ministry of Health organisation(s) Related to Specific to sexual health and HIV/AIDS services

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3.9. Clinical trial (extended option)

Defining Characteristics Physical name clinical_trial Definition An indicator of whether the client is on a clinical trial program Data element type Data element Scope HCV and HIV/AIDS. Extended option for sexual health Justification Required to identify clients and activities that are part of clinical trials so as to facilitate analyses that relate health service unit’s expenditure to the quantum of health services delivered. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 In clinical trial 2 Not in clinical trial 8 Not applicable 9 Unknown

Guide for use Assign ‘in clinical trial’ if the client has received services as part of a clinical trial program.

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3.10. Co-infection (extended option)

Defining Characteristics Physical name co_infection Definition An indicator of whether the client has a HCV-HIV, HCV-HBV or HBV-HIV co- infection. Data element type Data element Scope HCV and HIV/AIDS. Extended option for sexual health Justification Required to identify clients with HCV-HIV, HCV-HBV and HIV-HBV co- infection. While the lives of those with HIV has dramatically improved in the last few years, the consequences of associated illness such as hepatitis B and C co-infections have become more relevant and have a direct impact on clients treatment and care. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 HCV and HIV 2 HCV and HBV 3 HIV and HBV 4 Multiple 5 None 8 Not applicable 9 Unknown

Guide for use Assign 1 to 4 if client is co-infected with HCV-HIV, HC-HBV, HBV-HIV or HBV/HCV/HIV (multiple infections)

Administrative Information Item Version 1.0 Effective date 21 November 2011 Source document(s) Source NSW Ministry of Health organisation(s) Related to New data item

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3.11. Injecting drug use risk (extended option)

Defining Characteristics Physical name injecting_drug_use_risk Definition An indicator of whether the client is a current user of injectable recreational drugs, including steroids. Current drug use is defined as any person who has injected drugs in the past 12 months or any person requiring service directly related to injecting drug use, even if the drug use occurred more than 12 months ago. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification People who inject drugs are a priority population because they may be at higher risk for some blood borne viruses and an associated risk of sexually transmissible infections. The collection of data showing access to services by this population is important for service planning and monitoring. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 Yes, in the last 12 months (current) 2 Yes, more than 12 months ago 3 No 8 Not applicable 9 Unknown

Guide for use Assign ‘yes’ to indicate injecting drug use risk. Injecting includes intravenous, intramuscular and subcutaneous forms of injecting. All self administered illicit drugs are included in this definition.

Administrative Information Item Version 1.2 Effective date 21 November 2011 Source document(s) Source NSW Ministry of Health organisation(s) Related to New data item

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3.12. People living with HIV (extended option)

Defining Characteristics Physical name people_living_with_hiv Definition An indicator that the client is living with HIV/AIDS (a priority population in the NSW HIV and STI Strategies). Data element type Data element Scope HIV/AIDS and sexual health. Extended option for HCV Justification Required for analysis of HIV positive client usage. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 Yes 2 No 8 Not applicable 9 Unknown

Guide for use Assign ‘yes’ if the client attending the service is living with HIV

Administrative Information Item Version 1.1 Effective date 21 November 2011 Source document(s) Source NSW Ministry of Health organisation(s) Related to New data item

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3.13. People released from custodial settings (extended option)

Defining Characteristics Physical name people_released_from_custodial_settings Definition An indicator that the client has been released from custodial settings. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification Required for analysis of people who have been released from custodial/ correctional settings usage. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 Yes 2 No 8 Not applicable 9 Unknown

Guide for use Assign ‘yes’ if the client had past experience in a custodial or correctional setting.

Administrative Information Item Version 1.1 Effective date 21 November 2011 Source document(s) Source NSW Ministry of Health organisation(s) Related to New data item

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3.14. Presence of symptoms (extended option)

Defining Characteristics Physical name presence_of_symptoms Definition An indicator that presence of symptoms was a direct cause of the person initiating the service event. Data element type Data element Scope Sexual health. Extended option for HIV and HCV Justification Differentiates people attending clinics for screening versus those that present as symptomatic. Symptomatic clients/patients are not named as a priority population but remain an important group for sexual health services. This data element is intended to identify symptomatic clients who would otherwise be reported in the MDS as a non priority population occasions of service. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 Yes 2 No 8 Not applicable 9 Unknown

Guide for use Assign ‘yes’ if the client attending the service was a direct result from a client indicating presence of symptoms to request an appointment.

Administrative Information Item Version 1.1 Effective date 21 November 2011 Source document(s) Source NSW Ministry of Health organisation(s) Related to New data item

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3.15. Sex work risk (extended option)

Defining Characteristics Physical name sex_work_risk Definition An indicator of whether the client has provided sexual services in return for money or other material benefit in the last 12 months. Data element type Data element Scope HIV/AIDS, sexual health and HCV Justification People who have provided sexual services are a priority population because they may be at higher risk for some blood borne viruses and an associated risk of sexually transmissible infections. The collection of data showing access to services by this population is important for service planning and monitoring. Historically, sex workers have consistently low rates of HCV, HIV and STI in Australia but remain priority due to the risk of occupational exposure. It is important that services maintain close links with sex workers to ensure appropriate access to clinical services. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 Yes 2 No 8 Not applicable 9 Unknown

Guide for use Collect at client intake/admission. Assign ‘yes’ to indicate sex work risk.

Administrative Information Item Version 1.1 Effective date 21 November 2011 Source document(s) Source NSW Ministry of Health organisation(s) Related to New data item

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3.16. Sexual contact risk (extended option)

Defining Characteristics Physical name sexual_contact_risk Definition An indicator of the sex of the client/patients sexual partners. Data element type Data element Scope HIV/AIDS and sexual health. Extended option for HCV Justification Required for analysis of sexual behavioural risk factors for exposure to sexually transmitted infections and blood borne viruses. Local services do collect a wide range of valuable information about sexual identity and sexual orientation that is not included in the MDS. The purpose of this variable is to gauge service use patterns by priority populations, in particular men who have sex with men. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 Sexual contact with opposite sex only 2 Sexual contact with both sexes 3 Sexual contact with same sex only 4 No sexual contact 8 Not applicable 9 Unknown

Guide for use 1 Clients who reported sexual contact only with persons of the opposite sex in the last 12 months 2 Clients who reported sexual contact with both men and women in the last 12 months 3 Clients who reported sexual contact only with persons of the same sex in the last 12 months 4 Clients who reported no sexual contact in the last 12 months

Administrative Information Item Version 1.1 Effective date 21 November 2011 Source document(s) Source NSW Ministry of Health organisation(s) Related to New data item

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3.17. Status - HCV (extended option)

Defining Characteristics Physical name hcv_status Definition An indicator of the client’s hepatitis C treatment/care status Data element type Data element Scope HCV. Extended option for HIV and sexual health. Justification Required for analysis of hepatitis C antiviral treatment outcomes and treatment stage in combination with data item Principal Service Provided. Representation Data type Numeric Form Code Representational N layout Minimum size 1 Maximum size 1

Data domain Code Code descriptive terms 1 Risk group 2 HCV antibody positive 3 HCV RNA positive 4 AVT non-responder 5 AVT relapser 6 AVT sustained virological response 7 AVT ceased/discontinued 8 Not applicable 9 Unknown

Guide for use Assign 1 to 7 depending on client’s hepatitis C treatment/care status

Administrative Information Item Version 1.1 Effective date 8 December 2011 Source document(s) Source NSW Ministry of Health organisation(s) Related to New data item

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Appendix A: Data domain for country of birth

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Code Description Code Description 1601 Adelie Land (France) 9106 Chad 7201 Afghanistan 2101 Channel Islands 0918 Africa, nfd 8204 Chile 3201 Albania 1605 Chilean Antarctic Territory 4101 Algeria 6101 China (excludes SARs 8000 Americas, nfd and Taiwan Province) 3101 Andorra 8205 Colombia 9201 Angola 9204 Comoros 8401 Anguilla 9107 Congo 8402 Antigua and Barbuda 9108 Congo, Democratic Republic of 8201 Argentina 1501 Cook Islands 1602 Argentinian Antarctic Territory 8302 Costa Rica 7202 Armenia 8403 Aruba 9111 Cote d'Ivoire 0917 Asia, nfd 3204 Croatia 0001 At Sea 8407 Cuba 1101 Australia 3205 Cyprus 1603 Australian Antarctic Territory 3302 Czech Republic 1199 Australian External Territories, nec 2401 Denmark 2301 Austria 9205 Djibouti 7203 Azerbaijan 8408 Dominica 8404 Bahamas 8411 Dominican Republic 4201 Bahrain 5206 East Timor 7101 Bangladesh 8206 Ecuador 8405 Barbados 4102 Egypt 3301 Belarus 8303 El Salvador 2302 Belgium 2102 England 8301 Belize 9112 Equatorial Guinea 9101 Benin 8101 Bermuda 9206 Eritrea 7102 Bhutan 3303 Estonia 8202 Bolivia 9207 Ethiopia 3202 Bosnia and Herzegovina 0911 Europe, nfd 9202 Botswana 2402 Faeroe Islands 8203 Brazil 8207 Falkland Islands 1604 British Antarctic Territory 1502 Fiji 5201 Brunei Darussalam 2403 Finland 3203 Bulgaria 3206 Former Yugoslav Republic of 9102 Burkina Faso Macedonia (FYROM) 5101 Burma (Myanmar) 2303 France 9203 Burundi 8208 French Guiana 5102 Cambodia 1503 French Polynesia 9103 Cameroon 9113 Gabon 8102 Canada 9114 Gambia 9104 Cape Verde 4202 Gaza Strip and West Bank 8406 Cayman Islands 7204 Georgia 9105 Central African Republic

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Code Description Code Description 2304 Germany 2305 Liechtenstein 9115 Ghana 3306 Lithuania 3102 Gibraltar 2306 Luxembourg 3207 Greece 6103 Macau (SAR of China) 2404 Greenland 9212 Madagascar 8412 Grenada 9213 Malawi 8413 Guadeloupe 5203 Malaysia 1401 Guam 7104 Maldives 8304 Guatemala 9121 Mali 9116 Guinea 3105 Malta 9117 Guinea-Bissau 1403 Marshall Islands 8211 Guyana 8416 Martinique 8414 Haiti 9122 Mauritania 3103 Holy See 9214 Mauritius 8305 Honduras 9215 Mayotte 6102 Hong Kong (SAR of China) 8306 Mexico 3304 Hungary 1404 Micronesia, Federated States of 2405 Iceland 3208 Moldova 0000 Inadequately Described 2307 Monaco 7103 India 6104 Mongolia 5202 Indonesia 8417 Montserrat 4203 Iran 4104 Morocco 4204 Iraq 9216 Mozambique 2201 Ireland 9217 Namibia 2103 Isle of Man 1405 Nauru 4205 Israel 7105 Nepal 3104 Italy 2308 Netherlands 8415 Jamaica 8418 Netherlands Antilles 6201 Japan 1301 New Caledonia 4206 Jordan 1201 New Zealand 7205 Kazakhstan 8307 Nicaragua 9208 Kenya 9123 Niger 1402 Kiribati 9124 Nigeria 6202 Korea, Democratic People's Republic of 1504 Niue (North) 1102 Norfolk Island 6203 Korea, Republic of (South) 4199 North Africa, nec 4207 Kuwait 2104 Northern Ireland 7206 Kyrgyz Republic 1406 Northern Mariana Islands 5103 Laos 2406 Norway 3305 Latvia 0002 Not Elsewhere Classified 4208 Lebanon 1000 Oceania and Antarctica, nfd 9211 Lesotho 4211 Oman 9118 Liberia 7106 Pakistan 4103 Libya 1407 Palau

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Code Description Code Description 8308 Panama 2407 Sweden 1302 2311 Switzerland 8212 Paraguay 4214 Syria 8213 Peru 6105 Taiwan 5204 Philippines 7207 Tajikistan 3307 Poland 9227 Tanzania 1599 Polynesia (excludes Hawaii), nec 5104 Thailand 3106 Portugal 9128 Togo 8421 Puerto Rico 1507 Tokelau 4212 Qatar 1508 Tonga 1606 Queen Maud Land (Norway) 8425 Trinidad and Tobago 9218 Reunion 4106 Tunisia 3211 Romania 4215 Turkey 1607 Ross Dependency (New Zealand) 7208 Turkmenistan 3308 Russian Federation 8426 Turks and Caicos Islands 9221 Rwanda 1511 Tuvalu 1505 Samoa 9228 Uganda 1506 Samoa, American 3312 Ukraine 3107 San Marino 4216 United Arab Emirates 9125 Sao Tome and Principe 8104 United States of America 4213 Saudi Arabia 0003 Unknown 2105 Scotland 8215 Uruguay 9126 Senegal 7211 Uzbekistan 3213 Serbia and Montenegro 1304 Vanuatu 9223 Seychelles 8216 Venezuela 9127 Sierra Leone 5105 Viet Nam 5205 Singapore 8427 Virgin Islands, British 3311 Slovakia 8428 Virgin Islands, United States 3212 Slovenia 2106 Wales 1303 Solomon Islands 1512 Wallis and Futuna 9224 Somalia 4107 Western Sahara 9225 South Africa 4217 Yemen 8299 South America, nec 9231 Zambia 9299 Southern and East Africa, nec 9232 Zimbabwe 3108 Spain 7107 Sri Lanka 9222 St Helena 8422 St Kitts and Nevis 8423 St Lucia 8103 St Pierre and Miquelon 8424 St Vincent and the Grenadines 4105 Sudan 8214 Suriname 9226 Swaziland

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Appendix B: Data domain for preferred language

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Code Description Code Description 8000 Aboriginal dialect, nfd 2301 Catalan 9201 Acholi 6502 Cebuano 8601 Adnymathanha (Yura Ngawarla) 1199 Celtic, nec ( Breton, Cornish, Manx) 9299 African Languages (Excluding North 8299 Central Aboriginal, nec Africa), nec (includes Bemba, Fante, Malagasy) 7199 Chinese, nec (includes, Chang Chow, Hunan, Kan) 9202 Afrikaans 3503 Croatian 9203 Akan 3601 Czech 8199 Alawa 8199 Dalabon 3901 Albanian 1501 Danish 8201 Alyawarr (Alyawarra) 8103 Dhaangu 9101 American Languages 8699 Dhangatti (Dhangadi, Dungutti) 4201 Amharic 8699 Dharug (Dharuk) 8101 Anindilyakwa 8104 Dhay'yi 8202 Anmatyerr (Anmatyirra) 8105 - 8602 Arabana (Arabuna) 8399 Djabugay (Tjapukai) 4202 (including Lebanese) 8106 Djinang 3902 Armenian 8199 Djinba 3903 Aromunian (Macedo-Romanian) 8699 Djirbal (Dyirbal) 8203 Arrernte (Aranda) 5199 Dravidian, nec (includes Brahui, Malto, 9204 Asante Tulu) 4203 Assyrian (including Aramaic) 8699 Eastern Aboriginal, nec 9701 1201 English 8699 Awabakal 8699 Eora (Iyora, Iora) 8299 Banyjima (Panyjima) 3201 Estonian 8204 Bardi 9301 Fijian 2901 Basque 3299 Finnic, nec (includes Karelian, Lapp, Ludic) 3401 Belorussian 3202 Finnish 5201 Bengali 2101 French 8199 1402 Frisian 6501 Bisaya 1101 Gaelic (Scotland) 3501 Bosnian 8199 Galpu 3502 Bulgarian 8699 Garuwali 8699 Bundjalung (Bandjalang, Banjalang) 1301 German 8205 (Bunaba) 8699 Gidabul (Gidabal) 8102 Burarra 9302 Gilbertese 6199 Burman, nec (includes Lisu, Pho, Rawang) 8399 Girramay 6101 Burmese 8299 8699 Butchulla (Batjala) 2201 Greek 7101 Cantonese 8699 Gubbi Gubbi (Gabi Gabi) 8399 Aboriginal, nec 8199 Gudanyi ()

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Code Description Code Description 8301 Gugu Yalanji 5204 Konkani 5202 Gujarati 7301 Korean 8699 Gumbaynggir 8701 Kriol 8699 Gundidy (Gunditjmara) 8211 "Kukatha (Gugada, Kokatha)" 8199 Guragone (Gungurugoni, Gungoragone) 8212 Kukatja (Gugaja) 8302 Guugu Yimidhirr 8199 Kunbarlang (Gunbalang) 7102 Hakka 8108 Kunwinjku () 4204 Hebrew 4101 Kurdish 5203 Hindi 8599 Kurrama 6201 Hmong 8303 Kuuku-Ya'u 6299 Hmong-Mien Languages, nec (Mien, Yao) 8208 Kuurinji (Gurindji) 7103 Hokkien 8399 Lama Lama 3301 Hungarian 6401 Lao 2399 Iberian Romance, nec (includes Crioulo, 8199 Lardil Galician, Ladino) 8199 Larrakia 1502 Icelandic 2902 Latin 6503 IIokano 3101 Latvian 5299 Indo-Aryan, nec (includes Assamese, Kashmiri, Rajasthani) 1302 Letzeburgish 6504 Indonesian 3102 Lithuanian 9601 Invented Languages 8299 4199 Iranic, nec (includes Balochi, Ossetic, 3504 Macedonian Tajik) 8199 Madngele 1102 Irish 9702 2401 Italian 8199 Malak Malak 8199 Jaminjung (Djamindjun, Djamindjung, 6505 Malay Dyaminydyung) 5102 Malayalam 7201 Japanese 2501 Maltese 8206 Jaru (Djaru) 7104 Mandarin 8199 8199 8199 Jingili (Djingili) 8299 8401 (Kalaw Kawa Ya) 8299 Mantjiltjarra (Mandjildjarra) 8699 Kamilaroi (Gamilaraay) 9303 Maori (Cook Island) 8699 Kanai (Gurnai) 9304 Maori (New Zealand) 5101 Kannada 8199 Mara 8299 8199 Maramandinji 8107 Karrwa (Garawa, Garrwa) 5205 Marathi 8699 Kaurna 8199 Marin-ngarr (Moil) 8199 Kayadild (Gayardild, Kaiadilt, Kayardild) 8199 Marrithiyel 8299 Kaytetye (Kaitej) 8299 Martu-wangka 6301 Khmer 8111 Maung 8207 Kija (Gidya) 9205 Mauritian Creole 8399 Koko Bera

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Code Description Code Description 8199 Mayali (Myilli) 9499 Oceanian and Creoles, nec (includes Bislama, Pitcairnese, Solomon 8402 Meryam Mir Islands Pidgin) 4299 Middle Eastern and North African 9399 Oceanic , nec Languages, nec (includes Kabyle, Riff, (includes Hawai'ian, Rotuman, Tuvaluan) Shluh) 9206 Oromo 8213 Miriwoong 7999 Other Eastern Asian Languages (includes 6399 Mon-Khmer, nec (includes Khasi, Khmu, Ainu, Bhotia, Tibetan) Muong) 3999 Other Eastern European Languages, nec 9305 Motu (includes Georgian, Ingush, Romany) 8112 Murrinh-Patha 6999 Other Southeast Asian Languages 8699 Muruwarri (Chavacano) 8214 Mutpurra () 5999 Other Southern Asian Languages (includes Balti, Burushaski, Nuristani) 8199 Nakkara (Nakara) 2999 Other Southern European Languages, 8699 Narangga (Narrunga) nec (includes Friulian, Ladin, Romansch) 9306 Nauruan 8399 Oykangand 8199 Ndjebbana 8699 Paakantji (Baagandji) 5206 Nepali 8699 Palawa 1401 Netherlandic 9501 Papuan Languages 8299 Ngaanyatjara 4102 Pashto 8215 Ngaatjatjara 4103 Persian 8699 Ngadjan (Ngajan) 8217 8699 Ngadjuri 8218 8199 Ngalakan 3602 Polish 8299 2302 Portuguese 8199 Ngaliwuru 5207 Punjabi 8199 (Ngalgbon, Ngalkbun) 8115 8113 Ngangkikurungurr 8116 8199 Ngarinyman () 3904 Romanian 8501 3402 Russian 8699 Ngarrindjeri (Narrinyari) 9308 Samoan 8699 Ngiyampaa 1599 Scandinavian, nec (Faeroese) 9307 Niue 3505 Serbian 0001 Non Verbal, so described 9207 Shona 8199 Northern Aboriginal, nec 9799 Sign Languages, nec 1503 Norwegian 5208 Sindhi 0000 Not Elsewhere Classified 5211 Sinhalese 8699 Nugunu (Nukunu) 3603 Slovak 8114 Nunggubuyu 3506 Slovene 8216 Nyangumarta 9208 Somali 8299 Nyikina () 2303 Spanish 8502 Nyungar () 9211 Swahili 1504 Swedish

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Code Description Code Description 6506 Tagalog (Filipino) 8299 6499 Tai, nec (includes Buyi, Jui, Tho) 8223 Warlpiri 5103 Tamil 8222 (Warumunga) 5104 Telugu 1103 Welsh 7105 Teochew 8699 Wemba Wemba (Wamba Wamba) 6507 Tetum 8599 West Coast Aboriginal, nec 8399 Thaayorre 6599 Western Austronesian Languages, nec (includes Balinese, Bikol, Kapampangan) 6402 Thai 8399 Wik-Ngathana 4205 Tigrinya 8304 Wik-Mungkan 6508 Timorese 8399 Wik-Ngandjar (Wig-Ngandyara, Wik- 8117 Tiwi Nganjara) 9401 Tok Pisin (Pidgen English) 8699 Wiradjuri 9311 Tongan 8299 (Wurora) 8702 (Broken) 7106 Wu 4301 Turkish 8299 4399 Turkish and Central Asian Languages, 8225 Yankunytjatjara nec (includes Azeri, Mongol, Tatar) 8118 Yanyuwa (Anula) 3403 Ukrainian 8299 8399 Umpila 1303 Yiddish 0002 Unknown 8399 Yidiny 5212 Urdu 8503 Yindjibarndi 6302 Vietnamese 8599 Yinggarda (Inggarda) 8299 8399 Yir Yoront 8199 Wagaman (Wageman) 8199 Yiwaja (Yiwaidja) 8699 Wagaya (Wakaya) 8699 Yorta Yorta 8599 (Yamaji) 9212 Yoruba 8221 Walmajarri () 8199 Yugul 8199 Wampaya (Wambaya) 8699 Yugumbir (Yubumbee, Yugambeh) 8199 Wandarrang 8224 Yulparija 8299 Wangkatja 9213 Zulu 8699 Wangkumara 8199 Wardaman (Wardeman)

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