Indigenous Chronic Disease Package: Monitoring and ... · Web viewICDP Monitoring and Evaluation Framework Volume 3 Page 31 URBIS TEAM RESPONSIBLE FOR THIS REPORT: list of URBIS team

URBIS TEAM RESPONSIBLE FOR THIS REPORT:

Directors Alison WallaceDr Linda Kurti

Associate Directors Tomas LopataDuncan Rintoul

Senior Consultant Zoe CoxSub Consultants Murray Benton, INCA Consultancy

Acting Professor Margaret Kelaher, Centre for Health Policy, Programs and Economics, Melbourne School of Population Health, University of Melbourne

Expert Advisors Professor Ross Bailie and Dr Yin Paradies, Menzies School of Health ResearchGroup Support Lynda Jones, Alison Rees, Jillian YeomansJob Code KAJ44109

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Urbis Social Policy has received ISO 20252 certification, the new international quality standard for Market and Social Research, for the provision of social policy research and evaluation, social planning, community consultation, market and communications research. URBISAustralia Asia Middle Eastwww.urbis.com.au

TABLE OF CONTENTS

Appendix A ICDP Monitoring and Evaluation Reference Group Members..............................2

Appendix B List of Stakeholders Consulted...............................................................................3

Appendix C DoHA Divisions Responsible for Managing ICDP Measures................................4

Appendix D Matrix Mapping Sources of Data (Package-wide and Measure-specific) Reported Against ICDP Results as Specified in the Package-wide Program Logic.......................................................................................................................... 6

Appendix E Data Sources............................................................................................................9

Appendix F Data limitations.......................................................................................................17

Appendix G Terminology............................................................................................................24

Appendix H Key Indicators with Data Sources.........................................................................27

ICDP Monitoring and Evaluation Framework Volume 3

APPENDICES

Appendix A ICDP Monitoring and Evaluation Reference Group Members

ICDP Monitoring and Evaluation Framework Volume 3 Page 2

APPENDICES

ICDP Monitoring and Evaluation Reference Group Members

Name OrganisationMs Alison Killen Assistant Secretary, Better Health Care Branch Office for Aboriginal and

Torres Strait Islander Health

Dr Ron Borland Cancer Council Victoria

Dr Alex Brown Baker IDI Heart and Diabetes Institute (Melbourne)

Professor Sandra Eades Baker IDI Heart and Diabetes Institute (Melbourne)

Dr Lauren Cordwell Royal Australian College of General Practitioners

Dr John Daniels Redfern Aboriginal Medical Service

Dr Sophie Couzos National Aboriginal Community Controlled Health Organisation (NACCHO)

Ms Dea Delaney Thiele NACCHO

Mr Justin Mohamed NACCHO

Dr Carmel Nelson Kimberley Aboriginal Medical Services Council

Ms Indrani Peris-Caldwell Australian Institute for Health and Welfare

Professor Lisa Jackson Pulver Muru Marri Indigenous Health Unit, University NSW

Ms Leanne Wells Australian General Practice Network

Professor Kerin O’Dea Sansom Institute, University SA

Dr David Dumbrell Department of Health and Ageing

Mr Jeff McKenzie Department of Health and Ageing


APPENDICES

Appendix B List of Stakeholders Consulted

Over sixty stakeholders provided feedback on various drafts of the Monitoring and Evaluation Framework, drawn from the following:

The ICDP Monitoring and Evaluation Framework Reference Group

NACCHO

NACCHO Affiliates

AGPN

Australian Primary Care Collaboratives

State/Territory Departments of Health

DoHA personnel.


APPENDICES

Appendix C DoHA Divisions Responsible for Managing ICDP Measures


APPENDICES

ICDP Measure Management Responsibility

Measure DoHA Division Management Responsibility

A1 National Action to Reduce Indigenous Smoking Rates Business Group Division Mental Health and Chronic Disease Division

A2 Helping Indigenous Australians Reduce their Risk of Chronic Disease

Mental Health and Chronic Disease Division

A3 Local Indigenous Community Campaigns to Promote Better Health

Business Group Division

B1 Subsidising PBS Medicine Co-payments Pharmaceutical Benefits Division

B2 Higher Utilisation Costs for MBS and PBS Medical Benefits Division

B3 Supporting Primary Care Providers to Coordinate Chronic Disease Management

Primary and Ambulatory Care Division

B4 Improving Indigenous Participation in Health Care through Chronic Disease Self Management

Mental Health and Chronic Disease Division

B5 Increasing Access to Specialist and Multidisciplinary Team Care


B6 Monitoring and Evaluation OATSIH

C1 Workforce Support, Education and Training Health Workforce Division

C2 Expanding the Outreach and Service Capacity of Indigenous Health Organisations

OATSIH

C3 Engaging Divisions of General Practice to Improve Indigenous Access to Mainstream Primary Care


C4 Attracting More People to Work in Indigenous Health Business Group Division

C5 Clinical Practice and Decision Support Guidelines OATSIH


APPENDICES

Appendix D Matrix Mapping Sources of Data (Package-wide and Measure-specific) Reported Against ICDP Results as Specified in the Package-wide Program Logic


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Appendix E Matrix Mapping Sources of Data (Package-wide and Measure-specific) Reported Against ICDP Results as specified in the Package-wide Program Logic

MEDIUM TERM RESULTS

Results ICDP A1 A2 A3 B1 B3A

B3B B4 B5

AB5B C1 C2 C3 C4 C5

Chronic disease risk factors

There is a reduction in the incidence of preventable chronic disease risk factors among Indigenous Australians. X X X X

Smoking rates among Indigenous Australians are reduced. X X X X

More Indigenous Australians with or at risk of chronic disease adopt healthy lifestyle choices relating to smoking, nutrition and exercise. X X X X

Chronic disease manage-ment and follow up care

ICDP-funded health care services deliver a comprehensive and coordinated approach to chronic disease management, including increased and earlier access to primary health care, specialist and allied health services, affordable care and medicines.

X X X X X X X X

More Indigenous Australians with or at risk of chronic disease actively participate in their own health care. X X X X X X X X X X

Health outcomes are improved among Indigenous Australians with or at risk of chronic disease who participate in ICDP measures. X


APPENDICES

MEDIUM TERM RESULTS


B3B B4 B5

AB5B C1 C2 C3 C4 C5

Workforce expansion and support

More health care providers are equipped to assist Indigenous Australians with or at risk of chronic disease to make healthy lifestyle choices and to manage their condition.

X X X X X X X X X X X X

More health care providers are accessed by and provide quality care to Indigenous Australians with or at risk of chronic disease. X X X X X X X X X X X

There is an increase in the workforce providing primary health care and other health services to Indigenous Australians. X X X X X X X X X X X X X

EARLY RESULTS


B3B B4 B5

AB5B C1 C2 C3 C4 C5

Chronic disease risk factors

Resources for designing and delivering health promotion campaigns are accessible, effective and evidence-based

X X X

Indigenous Australians who have had contact with the ICDP have a better knowledge and understanding of the impact of preventable chronic disease risk factors on their wellbeing.

X X X X X X

Indigenous Australians who have had contact with the ICDP are more aware of and utilise the expanded range of health services and supports available to them to adopt healthy lifestyle choices and reduce smoking.

X X X X X X X X X X X

Indigenous Australians who have had contact with the ICDP make positive decisions about their health and lifestyle. X X X X X

Chronic disease management and follow-up care

ICDP-funded health system supports, incentives and subsidies are operating to facilitate the provision of quality primary health care for Indigenous Australians with chronic disease.

X X X X X X X X X

Financial and other barriers to accessing health care and medicines are reduced. X X X X X X X

Health services funded under the ICDP demonstrate cultural awareness and commitment. X X X X X X

Care coordination within ICDP-funded services is improved for Indigenous Australians with or at risk of chronic disease. X X X X X X X X

Indigenous Australians with chronic disease or associated risk factors have more services and supports available to help them manage their condition. X X X X X X X X X X

The number of Indigenous Australians with or at risk of chronic disease who X X X X X X X X X


APPENDICES

EARLY RESULTS


B3B B4 B5

AB5B C1 C2 C3 C4 C5

access primary health care services is increased.

Indigenous Australians in contact with ICDP measures value the enhanced services. X X X X X X X X

The number of Indigenous Australians with or at risk of chronic disease who access specialist and multi-disciplinary follow-up care is increased. X X X X


Health care providers demonstrate increased knowledge and improved practice in relation to the prevention, early identification and management of chronic disease for Indigenous Australians.

X X X X X X X X X

The ICDP workforce is retained and developed within funded services. X X X X X X X X X X

Marketing, training and recruitment strategies are successful in encouraging more people to work in primary health care and other services available to Indigenous Australians.

X X X X X X X X X

OUTPUTS (YEAR 1 AND ONGOING)


B3B B4 B5

AB5B C1 C2 C3 C4 C5


The workforce required to implements the ICDP is recruited, oriented and trained. X X X X X X X X X X X X X X

Package measures are efficiently implemented in accordance with agreed guidelines and timelines X X X X X X X X X X X X X X

Monitoring and reporting requirements are met X X X X X X X X X X X X X X

Internal and external stakeholders, sentinel sites and service providers consider the implementation of the Package to be addressing identified needs, and enhancing the existing service system

X X X X X X X X X X X X X X


APPENDICES

Appendix F Data Sources


APPENDICES

Defining data sources terminology in the Monitoring and Evaluation Framework

Terminology Descriptor

Aboriginal and Torres Strait Islander Health Performance Framework (HPF)

Published biennially by the AIHW incorporating a wide range of chronic disease performance indicators collected through various national and other databases/surveys (more information on HPF data sources and technical notes are included in this Appendix)

AGPN As a key stakeholder in a number of ICDP measures, the AGPN will participate in a number of monitoring and evaluation activities

APCC Program data from over 500 participating medical practices including clinical and service enhancement measurements

BEACH Collects information about clinical activities in general practice in Australia. The BEACH database includes over 1,200,000 GP-patient encounter records. Annually BEACH analyses data from 100 consecutive consultations from each of the randomly selected sample of 1,000 GPs

CDSM register Number of patients enrolled at the practice level in the Chronic Disease Management Program

Clinical data systems and/or quality improvement systems

Systematic collection and reporting of data relating to clinical performance and clinical outcomes

Community members consultation Face to face interviews or focus groups with members of local Indigenous communities to assess knowledge, awareness and impact of ICDP measures on local individuals, families, and communities

Community-level survey Quantitative survey tool used in A1 evaluation to assess impact of health promotion and social marketing campaign activity, to be determined when measure evaluations are developed

Consultation with … Face to face or telephone interviews, focus groups, email or other direct interaction with stakeholders (key stakeholders are identified in each measure)

GPET Data regarding postgraduate vocational training activity including the number of services requesting a general practice registrar length of time before these vacancies are filled and the number of placements which are completed

Health workforce survey One or more surveys of the ICDP workforce to be developed by the evaluator to assess impact of ICDP measures on health care professionals

Healthy for Life (H4L) Program data set within OATSIH, including data from participating Indigenous and other health services within a web-based reporting system

MBS Data held by Medicare Australia regarding uptake of clinical services provided under the Medical Benefits Schedule

MSOAP Program data held by DoHA including the number of patients per location and in total, number of visits and the types of participating organisations

National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)

A survey of a representative sample of Aboriginal and Torres Strait Islander Australians, conducted at six-yearly intervals, which covers a range of health and well-being issues


APPENDICES

Terminology Descriptor

NT AHKPI Northern Territory has developed a set of core indicators based on a range of clinical and social measurements in participating Indigenous community health services

OATSIH Services Reporting (OSR) OATSIH service reporting tool for annual reporting by ACCHSs

Organisational survey One or more surveys to be developed by the evaluator for Indigenous health services and general practices funded under the ICDP to assess the impact of ICDP measures at a service level

PBS Data held by DoHA regarding utilisation of pharmaceuticals subsidised under the Pharmaceutical Benefits Scheme

PIP/PIPIHI Data held by DoHA regarding the Practice Incentives Program, including registrations and uptake of the ICDP PIP Indigenous Health Incentive and process measures

Program documentation The range of qualitative and quantitative information held by program managers within DoHA including information regarding design and implementation of measures, process data, and some outcome measures

QAIHC QAIHC has developed a set of core indicators based on a range of clinical and social measurements in participating Indigenous community health services

USOAP Program reporting data held by DoHA including the number and type of Program occasions of care, extent of Program participation by specialists and allied health professionals, and reported success factors in the implementation of the Program


APPENDICES

Sources of data utilised in the ICDP Monitoring and Evaluation Frameworks (Package-wide and individual measures)

Data type/category Data source ICDP A1 A2 A3 B1 B3a B3b B4 B5a B5b C1 C2 C3 C4 C5

National Performance Indicators as Reported in the HPF Publication

x x x x x x

Administrative/system data sets

PIP x x x x

PIP IHI x x x

MBS x x x

PBS x x

APCC x x x

NT AH KPI x x

Healthy for Life x x

QAIHC x x

BEACH x

OSR x x x

USOAP x x

MSOAP x x

NATSIHS x

GPET x

ICDP Program documentation x x x x x x x x x x x x x x x

ICDP Program-specific evaluations x x x x

Surveys for ICDP evaluation

ICDP health workforce

x x x x x x x x x x

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APPENDICES

Data type/category Data source ICDP A1 A2 A3 B1 B3a B3b B4 B5a B5b C1 C2 C3 C4 C5

Organisations funded by the ICDP

x x x x

Website users (C5) x

Longitudinal survey of health promotion program participants

x

In-depth stakeholder consultations conducted for the ICDP evaluation (one-on-one interviews and focus groups; stakeholders described in each framework)

ICDP stakeholders at national, State/Territory, regional and local level

x x x x x x x x x x x x x x x

Surveys and statistics produced by associated providers (e.g. RTOs, Quitline)

x x x x x

Clinical data systems and/or quality improvement systems

x x x

Other Communications audit x

ICDP Monitoring and Evaluation Framework Volume 3Page 15

APPENDICES

Aboriginal and Torres Strait Islander Health Performance Framework data sources Following the advice of Department of Health and Ageing, Urbis understands that the Australian Institute of Health and Welfare’s Aboriginal and Torres Strait Islander Health Performance Framework (HPF) is the agreed standard for monitoring changes in the health of Indigenous Australians. The HPF consists of 70 measures across three tiers - health status and outcomes, determinants of health and health systems performance.

Of the HPF’s 70 performance indicators. Urbis has identified 24 which are of particular relevance to the monitoring and evaluation of the ICDP. See Appendix G for Technical Notes on these data sources.

List of data sources utilised in HPF indicators as referenced in ICDP Monitoring and Evaluation Framework

Number Name Data SourcesHPF #1.02 Top reasons for hospitalisation AIHW National Hospital Morbidity Database

HPF #1.05 Circulatory disease National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)

Bettering the Evaluation and Care of Health Survey (BEACH)

AIHW National Hospital Morbidity database

HPF #1.07 High blood pressure National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)



HPF #1.08 Diabetes National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)



HPF #1.09 End stage renal disease Australia and New Zealand Dialysis and Transplant Registry (ANZDATA)

AIHW National Hospital Morbidity Database AIHW National Mortality Database

HPF #1.15 Perceived health status National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)

National Aboriginal and Torres Strait Islander Social Survey (NATSISS)

HPF #1.16 Social and emotional wellbeing National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)


Western Australian Aboriginal Child Health Survey



APPENDICES

Number Name Data Sources

AIHW National Hospital Morbidity database AIHW National Mortality Database AIHW National Community Mental Health Care

Database AIHW National Residential Mental Health Care

Database

HPF #1.17 Life expectancy at birth 2006 Census Population and Housing AIHW National Mortality Database

HPF #1.22 All causes age-standardised death AIHW National Mortality Database

HPF #1.23 Leading causes of mortality AIHW National Mortality Database

HPF #2.03 Environmental tobacco smoke National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)

HPF #2.18 Tobacco use 2004-05 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)

2004 National Drug Strategy Household Survey

HPF #2.19 Tobacco smoking during pregnancy AIHW National Perinatal Data Collection

HPF #2.22 Level of physical activity National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)

HPF #2.23 Dietary behaviour National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)

HPF #2.26 Prevalence of overweight and obesity 2004-05 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)

HPF #3.03 Early detection and early treatment Medicare Database AIHW BreastScreen Australia Database National Bowel Cancer Screening Register 2004-05 National Aboriginal and Torres Strait

Islander Health Survey (NATSIHS) AIHW National Mortality Database Service Activity Reporting (SAR)

HPF #3.04 Chronic disease management Service Activity Reporting (SAR) Healthy for Life data collections Divisions of General Practice National

Performance Indicators

HPF# 3.05 Differential access to key hospital procedures

AIHW National Hospital Morbidity Database

HPF #3.06 Ambulatory care sensitive hospital admissions

AIHW National Hospital Morbidity Database

HPF #3.10 Aboriginal and Torres Strait Islander people in the health workforce

2006 ABS Census of Population and Housing

HPF #3.12 Access to services by types of service compared with need

National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)


Community Housing and Infrastructure Needs


APPENDICES

Number Name Data Sources

Survey (CHINS) 2006 ABS Census of Population and Housing AIHW National Hospital Morbidity Database General Practitioner data Medicare Database AIHW Labour Force surveys Service Activity Report (SAR) Drug and Alcohol Service Reporting (DASR) Health expenditure data Palliative care data

HPF #3.18 Aboriginal and Torres Strait Islander peoples training for health-related disciplines

Australian Government Department of Education, Science and Training’s Higher Education Student Statistics Collection

National Centre for Vocational education Research Collection

HPF #3.20 Recruitment and retention of clinical management staff (including GPs)

Service Activity Reporting (SAR) Rural Workforce Agency National Minimum

Data GP Data AIHW Labour Force surveys


APPENDICES

Appendix G Data limitations


APPENDICES

Data limitations and technical notes

Aboriginal and Torres Strait Islander Health Performance Framework (HPF)The following technical notes on HPF data sources and methods were prepared by the Department of Health and Ageing.

Aboriginal and Torres Strait Islander peoples and non-Indigenous‘Aboriginal and Torres Strait Islander peoples’ is the preferred term used throughout the HPF report. ‘People’ is an acceptable alternative to ‘peoples’ depending on context, but in general the term ‘peoples’ is used. The term Indigenous Australian is inclusive of all groups and is used where it is impractical to use the preferred term ‘Aboriginal and Torres Strait Islander peoples’ (e.g. tables, charts, figures and where the text requires the term to be repeated a number of times).

The term ‘non-Indigenous’ is used where the data collection allows not stated responses on the Indigenous status question to be separately identified to non-Indigenous. Where the not stated responses are included with non-Indigenous, the term ‘other Australians’ is used to refer to the combined non-Indigenous and not stated data.

Age-standardisationAge-standardisation controls for the effect of age, to allow comparisons of summary rates between two populations that have different age structures. Age-standardisation is used throughout this report when comparing Aboriginal and Torres Strait Islander Australians with non-Indigenous Australians for a range of variables where age is a factor in relation to the variable being examined. The main disadvantages with age-standardisation are that the resulting rates are estimates that are not the real rates for the population, the age-standardised rates are not meaningful themselves, only as a means for comparison, and they may hide important differences in distribution such as rates for particular ages. Lastly for age-standardisation to be effective the relationship between age and the variable needs to be approximately consistent between the two populations.

Main SourcesThe data the HPF are mainly drawn from national data collections and surveys. These include the following:

National Aboriginal and Torres Strait Islander Health Survey (NATSIHS): The 2004-05 NATSIHS included a sample of 10,400 Aboriginal and Torres Strait Islander Australians. This was considerably larger than the supplementary Indigenous samples in the 1995 and 2001 National Health Surveys (NHS) (3,681 in 2001). The NATSIHS sample was specifically designed to select a representative sample of Aboriginal and Torres Strait Islander Australians and thus overcome the problem inherent in most national surveys with small and unrepresentative Indigenous samples. The NATSIHS also uses the standard Indigenous status question. Information recorded in this survey is essentially ‘as reported’ by respondents. Responses may be affected by imperfect recall or individual interpretation of survey questions. Any data that are self-reported are likely to underestimate circumstances of which the respondent is unaware e.g. certain health conditions, or where they may feel reluctant to tell the interviewer e.g. weight, drug use. Selected non-Indigenous comparisons are available through the National Health Survey (NHS). The NHS was conducted in major cities, regional and remote areas, but very remote areas were excluded from the sample. In remote communities, there were some modifications to the NATSIHS content in order to address language and cultural appropriateness in traditional communities, as well as to assist respondents in understanding the concepts. Some


APPENDICES

questions were excluded and some reworded. Also paper forms were used in remote areas and computer assisted interview (CAI) instruments were used in non-remote areas. Further information on NATSIHS data quality issues can be found in the national publication ABS Cat. No. 4715.0 ABS 2006b.

The National Aboriginal and Torres Strait Islander Social Survey (NATSISS): The 2008 NATSISS was conducted between August 2008 and April 2009. Information was collected by personal interview from approximately 13,300 Aboriginal and Torres Strait Islander Australians aged 15 years and over throughout Australia, including those living in remote areas. The NATSISS sample was specifically designed to select a representative sample of Aboriginal and Torres Strait Islander Australians and thus overcome the problems inherent in most national surveys with small and unrepresentative Indigenous samples. The NATSISS uses the standard Indigenous status question. Information recorded in this survey is essentially ‘as reported’ by respondents, and hence may differ from that which might be obtained from other sources or by using other collection methodologies. Responses may be affected by imperfect recall or individual interpretation of survey questions. Selected non-Indigenous comparisons are available through the General Social Survey and a range of other surveys. Further details can be obtained from ABS 2009. Time-series comparisons are available through the 1994 National Aboriginal and Torres Strait Islander Survey.

CensusThe Census uses the standard Indigenous status question and it is asked for each household member. Measures that are drawn from Census data are subject to some data concerns relating to the unexplained growth in the Aboriginal and Torres Strait Islander population since the 1991 Census, and the limitations of Indigenous self-identification.

There are 4 principal sources of error in Census data: respondent error, processing error, partial response and undercount. Quality management of the Census program aims to reduce error as much as possible, and to provide a measure of the remaining error to data users, to allow them to use the data in an informed way.

In 2006, the ABS enhanced the sample for the Post-Enumeration Survey to include remote areas. This resulted in a doubling of the measured undercount for Indigenous Australians (from 5.7% to 11.5%).

The Census form may be completed by one household member on behalf of others. Incorrect answers can be introduced to the Census form if the respondent does not understand the question or does not know the correct information about other household members. Many of these errors remain in the final data.

The processing of information from Census forms is now mostly automated. Quality assurance procedures are used during Census processing to ensure processing errors are kept at an acceptable level. Sample checking is undertaken during coding operations, and corrections are made where necessary.

When completing their Census form, some people do not answer all the questions which apply to them. In these instances, a ‘not stated’ code is allocated during processing, with the exception of non-response to age, sex, marital status and place of usual residence. These variables are needed for population estimates, so they are imputed using other information on the Census form, as well as information from the previous Census.

Other Census data issues relate to the accuracy of the Census count itself, e.g. whether people are counted more than once, or are undercounted.

Problems with the accuracy of Indigenous population estimates impacts on the accuracy of life expectancy estimates and rate calculations eg mortality rates.

The 2006 Census based estimates were compared to previously published estimates using the 2001 Census based estimates. The analysis produced contradictory results, particularly with respect to “the gap” between Indigenous and non-Indigenous mortality over time. A number of investigations were undertaken to seek to understand the results and recommend options for future reporting of trends.


APPENDICES

Trend analysis using Indigenous population figures begin from 2001 and are based on 2006 Census estimates (back cast and projections) Series B. This solution recognises the difficulty of undertaking long trend analysis when there have been major shifts in Indigenous identification over time. Indigenous identification has changed considerably with each Census but this is less so between the most recent Censuses (i.e. between 2001 and 2006). A similar approach will again be required following the release of estimates based on the 2011 Census.

In 2011 the ABS will implement improvements to Census Indigenous enumeration procedures and will expand the scope of the Census Post Enumeration Survey to include very remote areas and discrete Indigenous communities.

Community Housing and Infrastructure Needs Survey (CHINS): The CHINS collects data on discrete Indigenous communities, including approximately 92,960 Aboriginal and Torres Strait Islanders in 2006 or 18% of the total estimated Indigenous population. The survey was also conducted in 2001 and 1999. The data are collected from key personnel in Indigenous communities and housing organisations knowledgeable about housing and infrastructure issues. This collection is not a population survey.

National Perinatal Data Collection: Birth notification forms are completed for all births of 20 weeks or more gestation, or a birthweight of 400 grams or more. The Perinatal National Minimum Data Set includes all births in Australia in hospitals, birth centres and the community. The state/territory of birth is provided for all births in each state/territory. State-level data are based on place where birth occurred, not place of usual residence. Complicated pregnancies from surrounding New South Wales may be referred to the Australian Capital Territory and hence there may be poorer outcomes attributed to Australian Capital Territory births. Because of this and the small numbers involved, care should be taken in interpreting data from the Australian Capital Territory (Laws & Sullivan 2004a). A standard data item for Indigenous status is specified in the Perinatal National Minimum Data Set. However, at this stage not all states and territories use this standard wording for the Indigenous status question on their forms. This impacts on the quality and comparability of the data collected (ABS & AIHW 2005). All jurisdictions collect Indigenous status of the mother for each baby. However, this statistic does not necessarily indicate the Indigenous status of the baby. Work is underway to include the Indigenous status of the baby in the Perinatal National Minimum Data Set. Studies linking perinatal data with birth registration data and hospital admissions show that Indigenous data are under-reported (Human Resources Development Canada & Health Canada 2003). In 2007, the AIHW completed an assessment of the quality of Indigenous status information in perinatal data in each state and territory. This involved a survey which was sent to the midwifery managers across Australia to determine how many hospitals in each jurisdiction obtain Indigenous status information of mothers giving birth from admission records and how many collect this information independently. The assessment also involved analysis of the variability in the number and proportion of mothers recorded as Indigenous in the perinatal data collection over time and across jurisdictions for the period 1991–2004. The outcomes of this assessment showed that Indigenous status data from New South Wales, Victoria, Queensland, Western Australia, South Australia and the Northern Territory are suitable for trends analysis and national reporting. Perinatal data from Tasmania, although improving, were deemed to be of insufficient quality. Although the most recent data in the Australian Capital Territory were of publishable quality, the data were not yet of sufficient stability to support trends analysis (AIHW: Leeds KL et al. 2007). All jurisdictions are working towards improving the quality of the Indigenous status data. States and territories have agreed to improve Indigenous data collection procedures in key data collections including implementation of the Best Practice Guidelines for the collection of Indigenous status in health data collections. Data on Indigenous status are not reported for Tasmania prior to 2005 as the not stated category for Indigenous status was included with the non-Indigenous category. The not stated category for Indigenous status is high for Tasmania (around 75%) and low for the other jurisdictions, not more than 0.5% (Laws & Sullivan 2004b). The ‘not stated’ category for birthweight was found to be small nationally in the evaluation of the Perinatal National Minimum Data Set. Therefore, the exclusion of not stated for birthweight will not have a significant impact on these data.

AIHW will work with the states and territories in the development of an enhanced Perinatal National Minimum Data Set to be operational by 2013.

National Hospital Morbidity Data: This is a data collection including all completed admitted patient episodes in public and private hospitals across Australia. The number and pattern of hospitalisations can be affected by differing admission practices among the jurisdictions and from year to year, and


APPENDICES

differing levels and patterns of service delivery. Some jurisdictions have slightly different approaches to the collection and storage of the standard Indigenous status question and categories in their hospital collections. The not stated category is missing from several collections. The incompleteness of Indigenous identification means the number of hospital separations recorded as Indigenous is an underestimate of hospitalisations involving Aboriginal and Torres Strait Islander people. For several years, Queensland, South Australia, Western Australia and the Northern Territory reported that Indigenous status in their hospital separations data was of acceptable quality (AIHW 2007). However, the AIHW has completed an assessment of the level of Indigenous under-identification in hospital data in all states and territories. Results from this assessment indicate that New South Wales, Victoria, Queensland, Western Australia, South Australia and the Northern Territory have adequate Indigenous identification (20% or less overall under-identification of Indigenous patients) in their hospital separations data. It has therefore been recommended that reporting of Indigenous hospital separations data be limited to aggregated information from New South Wales, Victoria, Queensland, Western Australia, South Australia and the Northern Territory. Tasmania and ACT data are presented at the state/territory level and should be used with caution, but they are not aggregated with the other 6 jurisdictions. AIHW will commence another audit process with audits in all states and territories and invite full participation of jurisdictions in the process to assess improvements in the data quality. The proportion of the Indigenous population covered by the 6 jurisdictions is 96% (ABS & AIHW 2005).Interpretation of results should take into account the relative quality of the data from the jurisdictions.

Hospitalisation data for these 6 jurisdictions should not be assumed to represent the hospitalisation experience in the Australian Capital Territory and Tasmania.

From the AIHW study it was possible to produce correction factors for the level of Indigenous under-identification in hospital data at the national level.

National Mortality Database: The mortality rate for Indigenous Australians can be influenced by identification of Indigenous deaths, late registration of deaths, as a result of coronial inquiry, and changes to death forms and/or processing systems. Due to the small size of the Indigenous population these factors can significantly impact on trends over time and between jurisdictions.

All jurisdictions comply with the standard wording for the Indigenous status question and categories for their death registration forms. However, Victoria, South Australia, the Northern Territory and the Australian Capital Territory all have slightly different wording to the national standard for the instruction on those with both Aboriginal and Torres Strait Islander origin (ABS & AIHW 2005). While the wording is only slightly different, states and territories have agreed to the implementation of the Best Practice Guidelines for the collection of Indigenous status in health data collections.

Almost all deaths in Australia are registered. However, the Indigenous status of the deceased is not always recorded/recorded correctly. The incompleteness of Indigenous identification means the number of deaths registered as Indigenous is an underestimate of deaths occurring in the Aboriginal and Torres Strait Islander population (ABS 1997). As a result, the observed differences between Indigenous and non-Indigenous mortality are underestimates of the true differences.

While the identification of Indigenous deaths is incomplete in all state and territory registration systems, 5 jurisdictions (New South Wales. Queensland, Western Australia, South Australia and the Northern Territory) have been assessed by the ABS and the AIHW as having adequate identification. Longer term mortality trend data are limited to 3 jurisdictions (Western Australia, South Australia and the Northern Territory) with 10 years of adequate identification of Indigenous deaths in their recording systems. The quality of the time-series data is also influenced by the late inclusion of a not stated category for Indigenous status in 1998. Prior to this time, the not stated responses were probably included with the non-Indigenous. The ABS calculated the identification rate of Indigenous deaths for the period 2006–2007 through data linkage between the Census and death registration records to examine differences in reporting of Indigenous status across the two datasets (ABS 2009b).

Table 1: Indigenous deaths identification rate, state/territory and Australia, 2006-2007

State/territory Identification Rate

NSW 0.87


APPENDICES

State/territory Identification Rate

Qld 0.94

WA 1.11

NT 1.09

Vic, SA, Tas, ACT, Overseas territories 0.65

Australia 0.92

Source: ABS 2009b

As part of the data development work funded under the National Indigenous Reform Agreement (NIRA) the ABS will link Census records with death registration records to assess the level of identification again in 2011.

BEACH: The Bettering the Evaluation And Care of Health (BEACH) survey collects information about consultations with GPs, including GP and patient characteristics, patient reasons for the visit, problems managed and treatments provided. The survey has been conducted annually since April 1998. Information is collected from a random sample of approximately 1,000 GPs from across Australia each year. Each GP provides details of 100 consecutive consultations.

Although the questionnaire contains an Indigenous identifier, it is unknown whether all GPs ask their patients this question. In a sub-study Supplementary Analysis of Nominated Data of approximately 9,000 patients, it was found that if the question on Indigenous status was asked within the context of a series of questions about origin and cultural background, 2.2% identified as Indigenous. This is twice the rate routinely recorded in BEACH, indicating that BEACH may under-estimate the number of Indigenous consultations.

Under the NIRA, state and territory governments have agreed to the implementation of the Best Practice Guidelines for the collection of Indigenous status in health data collection, which include recommended strategies for local service providers such as GPs and practice nurses to improve Indigenous identification data.

Life expectancy at birth calculationThe gap in life expectancy between Indigenous and non-Indigenous Australians is currently estimated to be between 9.7 years (females) and 11.5 years (males). Life expectancy estimates are based on population and deaths data. Unfortunately there are significant problems with the quality of Indigenous data in these data sets. This has led to a great deal of variability and uncertainty in the estimates of life expectancy for Indigenous Australians. A number of 'indirect' methods for estimating Indigenous life expectancy have been used previously. This method estimates Indigenous deaths through looking at changes in the population and how many deaths would be expected between the Census periods. However, the 'indirect' method was found to be highly sensitive to small variations in the population estimates. Estimates of the gap between Indigenous and non-Indigenous Australians for the period 1996-2001 varied depending on the indirect method used eg 20 years, 17 years and 13 years. The ABS recently decided to use 'direct' methods to calculate 2005-07 life expectancy for Indigenous Australians. Indigenous deaths are estimated through data linkage of Census and deaths data. While the standard direct method appears the most robust as it is less affected by variations in the underlying data, it will still be affected by the assumptions made in estimating the Indigenous population and deaths

MBS/PBS Voluntary Indigenous IndicatorIn November 2001, a Voluntary Indigenous Identifier (VII) question was included on all Medicare enrolment forms. Until recently, the VII data was only used to analyse broad service trends and there were questions about its reliability for more detailed reporting. However, recent assessments have indicated VII data quality has improved substantially over recent years, and that the latest available VII


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data are capable of providing statistically reliable estimates of Indigenous health service useage at the national and state/territory level (Presentation by Dr Darren Benham, OATSIH 2008). The AIHW used information from Medicare VII data for estimating expenditure on Medicare and PBS for the report, Expenditures for Health on Aboriginal and Torres Strait Islander People 2006-07.

The Australian Primary Care Collaboratives (APCC)The data managers of APCC have indicated their willingness to discuss with DoHA how it might be involved in the evaluation of the ICDP. The APCC data system contains many clinical outcome data that would be useful for the evaluation. However, there are some restrictions on the type of data that can be accessed. Moreover, the APCC operates with a selective group of general practices which are unlikely to be representative of Australian general practices. There is a lack of rigorous published data available from the APCC and it is acknowledged that the Aboriginal and Torres Strait Islander patient status identifier is currently poorly recorded at a practice level. Strategies for improving the Indigenous patient identifier would be an important precursor to extracting data on Aboriginal and Torres Strait Islander patients for the purposes of the ICDP evaluation – with timing of this critical in determining whether any changes in recorded service provision is a result of improved identification or improved service delivery.

ICDP program documentationAs indicated previously (see Vol.1, section 3), the nature of data to be collected by ICDP program management is still being determined in some areas. It will take a year or so to assess the quality and comparability of data collected via ICDP program reporting. An assessment will need to be made at a later date to assess the quality, utility and accessibility of the data for evaluation purposes in particular of the ICDP evaluator.

ReferencesAustralian Bureau of Statistics 1997, Occasional paper: Mortality of Aboriginal and Torres Strait Islander Australians. ABS cat. no. 3315.0, ABS, Canberra.

Australian Bureau of Statistics 2007b, Deaths Australia 2006. ABS cat. no. 3302.0., ABS cat. no. 3302.0, Canberra.

Australian Bureau of Statistics 2009, National Aboriginal and Torres Strait Islander Social Survey 2008, ABS cat. no. 4714.0, Canberra

Australian Bureau of Statistics 2009b, Experimental Life Tables for Aboriginal and Torres Strait Islander Australians 2005-2007, Australia, ABS cat. no. 3302.0.55.003, Canberra

Australian Bureau of Statistics & Australian Institute of Health and Welfare 2005, The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples 2005, ABS cat. no. 4704.0; AIHW cat. no. IHW 14, Canberra

Australian Institute of Health and Welfare 2007, Australian hospital statistics 2005–06, AIHW cat. no. HSE 50, Health services series no. 30, AIHW, Canberra

Australian Institute of Health and Welfare, Leeds KL, Gourley M, Laws PJ, Zhang J, Al-Yaman F & EA, S 2007, Indigenous mothers and their babies, Australia 2001–2004. AIHW cat. no. PER 38. Perinatal statistics series no. 19., AIHW, Canberra.

Human Resources Development Canada & Health Canada 2003, The well-being of Canada’s young children, Government of Canada, Ottowa.

Laws, PJ & Sullivan, EA 2004a, Australia’s mothers and babies 2002, Perinatal Statistics Series No. 15, AIHW National Perinatal Statistics Unit, AIHW cat. no. PER 28, Sydney.


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Appendix H Terminology


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Terminology The following definitions refer to terminology used throughout the Monitoring and Evaluation Framework.

Indigenous Australians – The term Indigenous Australians has been used throughout this report to encompass Aboriginal and Torres Strait Islander peoples.

Aboriginal Community Controlled Health Service – An Aboriginal Community Controlled Health Service is (as defined by the National Aboriginal Community Controlled Health Organisation): an incorporated Aboriginal organisation initiated by a local Aboriginal community based in a local Aboriginal community governed by an Aboriginal body which is elected by the local Aboriginal community delivering a holistic and culturally appropriate health service to the community which controls it.

By definition, organisations controlled by government to any extent are excluded.

Indigenous health services – An Indigenous health service is a health service funded principally to provide services to Indigenous Australians. Indigenous health organisations are not necessarily community-controlled. Indigenous health services can be run by state or territory governments.

Indigenous health workforce – Depending on the context, the term Indigenous health workforce has been used in the Framework to refer to: Indigenous Australians who are employed in the health workforce Non-Indigenous Australians who are employed in areas of the health workforce that deliver

specific services to Indigenous Australians.

Chronic disease – In using the term chronic disease, the definitions outlined in the 2005 National Chronic Disease Strategy and in the Indigenous Chronic Disease Package Factsheet recently released by DoHA have been used. Chronic diseases: have complex and multiple causes usually have a gradual onset, although they can have sudden onset and acute stages occur across the life cycle, although they become more prevalent with older age can compromise quality of life through physical limitations and disability are long term and persistent, leading to gradual deterioration of health while usually not immediately life threatening, they are the most common and leading cause of

premature mortality.The Indigenous Chronic Disease Package Factsheet makes specific reference to the following chronic diseases: circulatory disease diabetes cancer chronic respiratory disease.The focus on these diseases is based on evidence that chronic diseases and associated risk factors are responsible for about two-thirds of the health gap between Indigenous and non-Indigenous Australians. Aboriginal and Torres Strait Islander people are more likely to die from these conditions than a non-Indigenous person with the same condition, 1.5 times more likely to die from cancer and 12 times more likely to die from diabetes. Tobacco smoking alone is responsible for some 20% of all deaths of Aboriginal and Torres Strait Islander people. The Indigenous Chronic Disease Package will focus on preventing and better treating and managing those chronic diseases


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identified as responsible for the majority of mortality in the Indigenous population, and their risk factors.

Primary health care service – Primary health care is the first level of contact of individuals, families and community with the health care system. Within the Australian context there are a variety of types of services that are referred to as primary health care services. These are: general practices where the general practitioner is the principal service provider with a varying

number of other services provided through the practice community health services Indigenous health services allied health services.


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Appendix I Key Indicators with Data Sources


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Documents

Indigenous Chronic Disease Package: Monitoring and ... · Web viewICDP Monitoring and Evaluation Framework Volume 3 Page 31 URBIS TEAM RESPONSIBLE FOR THIS REPORT: list of URBIS team