The following list of research and evaluation projects undertaken in 2016 includes a mix of short-term projects completed in one calendar year and longer-term projects extending in part throughout 2016.

2016 research projects

Illawarra Shoalhaven Local Health District
Duration: November 2014 – December 2016


Aboriginal Australians are known to experience chronic diseases at much higher rates than other Australians, but little is known about the impact of chronic conditions on Aboriginal people, their families and communities, or how their chronic disease is being managed, particularly in urban communities. This study investigated the factors that impact on Aboriginal people’s experience of chronic conditions and its management in the Illawarra Shoalhaven Local Health District (ISLHD) in order to inform improvements in care planning across the care continuum.

What we did

The study commenced in November 2014. It was conducted by a team of Indigenous and non-Indigenous UOW researchers from CHSD, the Faculty of Science, Health and Medicine (Graduate School of Medicine) and the Faculty of Social Sciences (Health and Society) in collaboration with the ISLHD. The research team has worked closely with the project steering committee and relevant stakeholders within the region including Aboriginal community members and organisations to establish and conduct the research.

We addressed the four key study objectives as follows:

  • To describe the extent and type of chronic disease in the Aboriginal population in the Illawarra and Shoalhaven regions, we conducted a targeted review of the literature including peer reviewed journal articles, books and 'grey' literature (McMullen, et al. 2015);
  • To document formal chronic disease management models of care for Aboriginal patients across NSW, we conducted a program design review, involving a desk review of published guidelines for Aboriginal chronic disease models of care and conducted nine interviews with the managers of programs operating in the ISLHD;
  • To explore and document Aboriginal people’s experiences of chronic disease management, we conducted 22 qualitative interviews and four focus group discussions with 27 Aboriginal people managing chronic illness in the community;
  • To identify the strengths and weaknesses of current chronic disease management for Aboriginal people, we conducted 22 qualitative interviews with service providers and systems stakeholders.

The study highlighted the unacceptable rates of preventable chronic disease among Aboriginal people in the Illawarra and Shoalhaven regions and identified the need to strengthen supports offered to chronically ill Aboriginal people, particularly in the hospital-stay and post-discharge periods. Better linkages between health and social services in the region are needed to address the underlying social and cultural determinants of health. The study found that health literacy is a major gap in current supports. The region benefits from a number of Aboriginal targeted chronic disease management programs operated by both mainstream and Aboriginal organisations, but these need to be more widely promoted and enhanced. There is also scope for much improved information about benefits available under the Closing the Gap program, a greater uptake of general practitioner care plans by GPs, and a stronger role for Aboriginal Community Controlled Health Services. A comprehensive strategy to address the Aboriginal health workforce would assist in achieving improvements in each of these areas.

The results of the study are presented in three separate reports - Final Report; Summary Report; and Community Report – all of which were submitted in December 2016.

There are unacceptable rates of preventable chronic disease amongst Aboriginal people in the Illawarra and Shoalhaven regions. There is a need to strengthen the supports offered to chronically ill Aboriginal people while in hospital and in the post-discharge period. 

AHSRI project team: Kathleen Clapham, Joanna Mason, Pam Grootemaat, Nadia Neal, Virginia Marshall, Claire Manning

Collaborators: Scott Winch (Graduate Medicine, University of Wollongong), Kate Senior (School of Health and Society, University of Wollongong)

COORDINARE, South Eastern NSW Primary Health Network
Duration: January – August 2016


This project was undertaken to review and evaluate past investments in after-hours primary care by the Illawarra-Shoalhaven Medical Local and the Southern NSW Medicare Local. These investments sought to increase consumer and provider awareness of after-hours primary care services; increase the availability of face-to-face after-hours primary care; improve after-hours care in residential aged care; and improve the provision of after-hours palliative care. The aim of the project was to use the findings to inform future decisions and investments in after-hours primary care by the South Eastern NSW Primary Health Network. Primary Health Networks replaced Medicare Locals in 2015.

What we did

The project involved a review of documentation regarding after-hours primary care in the period 2012-2015, consultation with key stakeholders, a search of some relevant literature and analysis of data on emergency department presentations and after-hours items in the Medicare Benefits Schedule. Analysis of emergency department presentations used a definition of ‘potential primary care’ presentations: patients classified into category 4 or 5 of the Australasian Triage Scale who did not arrive by ambulance and were self-referred. Literature searching identified 56 potentially relevant papers. The full text of each paper was reviewed and relevant papers cited in the final report.

The review of past investments to improve after-hours primary care was limited to the available documentation. Certain aspects of the ‘logic’ underpinning some of these investments made a lot of sense, particularly engagement of pharmacies (to improve knowledge and awareness of available after-hours services) and a health literacy approach to community awareness campaigns. The review highlighted the difficulty implementing meaningful change in residential aged care.

Searching the literature found limited research evidence to guide decisions about improving after-hours primary care. Systematic reviews of the evidence regarding primary care contain almost no reference to after-hours care. Reviews of the literature on after-hours primary care have only been undertaken for very different health systems to Australia. The evidence regarding after-hours care in residential aged care and palliative care is also very limited.


Project team: Malcolm Masso, Peter Samsa

Illawarra Shoalhaven Local Health District
Duration: November 2014 – June 2016


This project aimed to identify patient factors associated with poor bowel preparation prior to colonoscopy and address modifiable factors such as patient engagement.

What we did

The project involved two core components:

  • A retrospective audit of colonoscopies performed in the previous 12 months to assess the proportion of patients presenting with sub-optimal bowel preparation.
  • An endoscopist-blinded randomised controlled study where patients in an intervention group received additional education (in relation to their colonoscopy) from an enrolled nurse in the days preceding the procedure.

The project examined the effects of additional patient education and support on the quality of bowel preparation and levels of patient satisfaction. The hypothesis tested was that the intervention leads to a clinically significant reduction in the number of suboptimal bowel preparations. Better bowel preparation translates to less early surveillance or repeat colonoscopies and more efficient resource allocation from the organisational perspective.

CHSD worked in conjunction with The Wollongong Hospital Gastroenterology Department on several elements of this project including:

  • Providing support in completing relevant ethical applications.
  • Developing an evaluation framework to underpin the overall conduct of the project.
  • Developing appropriate patient experience and satisfaction instruments for data collection.
  • Developing assessment tools to measure the sustainability and scalability of the project.
  • Providing statistical expertise with data analysis.
  • Providing support in report writing.

NSW Ombudsman
Duration: May – December 2016


In 2015, the NSW Ombudsman on behalf of the Child Death Review Team (CDRT) commissioned CHSD to undertake a scan of childhood injury and disease prevention infrastructure in NSW. This was a first step in considering options for bolstering childhood injury and disease prevention activities in the state. The scan confirmed that there is a need for stronger leadership and coordination to deliver further improvements in childhood injury and disease prevention in NSW.

This ‘second stage’ project identified strategic observations relevant to improving the coordination of childhood injury prevention in NSW. It focused on children aged 0-17 years and predominantly unintentional injury, considering three key areas:

  • Research coordination – are there opportunities to coordinate research on childhood injury prevention, and who should lead that?
  • Data coordination – are there opportunities to link and analyse relevant data sets to inform childhood injury prevention initiatives, and who should lead that?
  • Stakeholder initiatives – are there opportunities for organisations with a role in childhood injury prevention to coordinate activities and messages?

What we did

A targeted review of grey and academic literature was completed focused on effective coordination mechanisms relevant to childhood injury prevention within Australia and in selected international locations. A narrative review was completed that aimed to objectively report what is broadly known about the topic by retrieving and synthesising relevant information; and generating an overview of the topic to provide context and place the information into perspective.

Semi-structured interviews were conducted with 28 key stakeholders predominantly located across Australia but including representatives from other countries perceived as leaders in the childhood injury prevention field. These interviews were completed by telephone or face to face meetings and explored stakeholders’ views about approaches to childhood injury prevention coordination and factors influencing their sustainability.

A final report was produced drawn from the evidence that identified strategic opportunities that may support improved coordination of the key components of a coordinated approach to injury prevention including: policy leadership; data and information systems; research and knowledge translation networks and coalitions, collaborations and partnerships. Key strategic observations provided a common starting point for future discussions.

Related links

DOWNLOAD THE Childhood injury prevention: Strategic directions for coordination in New South Wales REPORT

Download the media release Ombudsman New South Wales: NSW Child Death Review Team report  (pdf)

Project team: Professor Kathleen Clapham, Cristina Thompson, Darcy Morris


Macquarie University and AHSRI, University of Wollongong, have been awarded an Australian Research Council linkage grant to develop measures to understand outcomes in community aged care services.  The understanding and measuring of outcomes are needed to ensure that consumers and their carers of packaged care services obtain the assistance and services that are important to them; and that the approach to service delivery is personalised and respects and values the individual care needs of older people.  

In order to ensure that these measures are meaningful and practical to use, we are partnering with four providers of community aged care services in NSW.

These industry partners will be actively involved in the development of the measures and will help test the measures with a range of their consumers in both metropolitan and regional areas of NSW. The former Aged & Community Services NSW and ACT is also a partner in the project. The project is also working with Professor Ann Netten from the University of Kent, who has extensive experience in developing an Outcomes Toolkit for use in the United Kingdom (View the ASCOT website).

First National Workshop on the Measurement of Outcomes in Community Aged Care

Monday 2 March 2015 

Measuring Outcomes in Community Care Workshop

Tuesday 3 March 2015 

Activity Based Funding Taskforce within the NSW Ministry of Health
Duration: October 2015 – June 2016 


Hospitals that provide radiotherapy services commonly experience a significant increase in hospital operating costs, relating both to direct patient care and indirect or infrastructure costs of radiotherapy technology. The drivers of cost and the cost differential for different types of radiotherapy services are currently not captured in the NSW cost data reported in the District and Network Return. This project was undertaken to examine the detailed service and cost inputs associated with the radiotherapy treatment and to identify the full cost of radiotherapy services. It is expected that the findings of this review will be used to improve the methodology for costing radiotherapy and eventually also inform the funding of radiotherapy services in NSW. 

What we did

The project involved data analysis, stakeholder consultations with multidisciplinary radiotherapy teams, detailed process mapping, and a review of costing methods in six selected NSW radiotherapy services. The review provided justification for the increased cost of radiotherapy services and identified multiple sources of funding.

The analysis utilised data collected from the process mapping, clinical costing outputs from the District and Network Return and financial data. Reports from the Radiotherapy Information System were also accessed for two of the sites to assist in mapping the patient journey through a course of radiotherapy.

One key output of this review included a conceptual model for radiotherapy care that identified some activities that were common to all radiotherapy care and others that were indicators of service complexity and cost (based on staff time) for different courses of treatment.

A new radiotherapy costing standard was developed to be included in the NSW Cost Accounting Guidelines. The cornerstone of this new costing standard is a standardised extract from the Radiotherapy Information System that enables the mapping of service activities to be costed. Relative value units were developed for each of these activities to support a more accurate allocation of costs.

The categories and types of activities, complexity bandings, and resource input types were defined and the total full costs of the radiotherapy service for each centre were estimated. The total average costs of the individual service events and for a course of radiotherapy treatment were calculated based on the total costs for each centre. 

Project team: Jenny McNamee, Habib Seraji, Milena Snoek

Cancer Institute NSW
Duration: May 2015 – April 2016


The Cancer Institute NSW commissioned CHSD to develop a suite of prioritised cancer patient experience indicators to support quality improvement efforts within NSW local health districts. This work is occurring within the context of increasing interest within the health system in patient-reported experience measures and patient-reported outcome measures. The rationale is that through monitoring indicators of patient experience, cancer services within local health districts in NSW will improve their understanding of how patients experience care and identify areas for quality improvements and service redesign.

What we did

The project methodology included three core components:

  1. A literature scan to support the design of the survey instrument for the Delphi study.
  2. Implementation of a Delphi study with academic/technical experts, health care professionals, consumers and carers with appropriate backgrounds in cancer patient experience.
  3. Facilitation of a series of workshops to produce a suite of prioritised cancer patient experience indicators.

The literature scan focused on identifying the domains, domain elements, exemplar items, and possible indicators derived from measurement tools and survey items for use in the first round survey of the Delphi study.

A modified Delphi study was implemented to elicit expert opinion about the most important domains of patient experience to measure. Evidence demonstrates that the Delphi technique is an effective and reliable data collection method that is particularly useful when there is little empirical knowledge and thus uncertainty surrounding the area being investigated. Respondents to the survey were categorised into three expert groups (consumers, healthcare professionals and academic/technical experts). A total of 158/202 surveys were returned in Round 1 and 112/149 were returned in Round 2, with each group being equally represented. A high degree of consensus was observed among respondents regarding the importance of measuring certain domains and domain elements of cancer patient experience.

Three workshops were also facilitated in late 2015, with a total of 51 participants (including consumers, healthcare professionals and academic/technical experts). These consultation workshops were very valuable, providing numerous useful insights and critiques of the draft indicators, and again reflecting a high degree of consensus among participants.

The final project report was submitted in April 2016. The report consisted of two volumes; a synthesis report and a more detailed companion technical report which provided a comprehensive explanation of the key methodological steps undertaken to develop the prioritised indicators of cancer patient experience. The finalised suite of 20 prioritised cancer patient experience indicators were developed to assess adult cancer patient experience across most phases of the patient journey, for diverse care settings and all tumour groups.

Journal article

Williams KE, Sansoni J, Morris D and Thompson C (2018) A Delphi study to develop indicators of cancer patient experience for quality improvement. Supportive Care in Cancer, 26 (1): 129-138.


Project team: Jan Sansoni, Cristina Thompson, Kate Williams, Darcy Morris



Illawarra Shoalhaven Local Health District (ISLHD)
Duration: June 2016 – December 2016


The patient safety and financial implications of adverse incidents and complications that arise in hospitals is substantial. It is important to be able to better utilise the available information from a number of sources to inform and support improvement initiatives. This project was part of a collaborative research agreement between ISLHD and AHSRI and involved the ISLHD Clinical Governance and Information Management Units. The project aimed to ensure that the best use is made of the available information to identify the significant drivers of cost and service capacity related to complications of hospital care.

What we did

The project involved two main components: undertaking analysis of the data relating to hospital acquired diagnoses and complications and with the presentation of results and providing assistance in the development of local reporting tools for ongoing analysis of safety and quality data.

The project involved three consultation sessions where the approach to safety and quality reporting was discussed and the results of analysis were presented to key staff in Clinical Governance and Information Management Units. Key issues that were discussed included clinician engagement, the identification of priority concerns and the assessment of organisational risk (both clinical and financial).

The project delivered two SQL-based algorithms to include within the ISLHD reporting system. These algorithms were both developed in Australia for monitoring adverse care outcomes. They are the Classification of Hospital Acquired Diagnoses (CHADx) and the newly developed classes of Hospital Acquired Complications (HAC). The inclusion of these algorithms in local reporting would enable local timely reporting of episodes of care in which adverse outcomes of care occurred.

University of Wollongong Global Challenges Program
Duration: November 2014 - December 2016


Approximately 320,000 Australians currently have dementia with that number set to balloon to 1,000,000 by the year 2050. This huge shift demands immediate action to ensure society is able to respond to the needs of those with dementia, and reduce the stigma faced by those living with the symptoms.

The Dementia-friendly Kiama pilot project brings together researchers from a range of disciplines to examine the dementia-friendly features of the physical and social environments in Kiama (New South Wales). The research – a partnership between the University of Wollongong, Kiama Municipal Council, Alzheimer’s Australia and the Kiama community –explores components that contribute to ‘Dementia Friendly Communities and Organisations’ and therefore to the opportunities, challenges and overall quality of life of people living with dementia. Components include the:

  • dementia knowledge and attitudes of the community
  • design and use of community places and spaces
  • design of virtual environments to promote dementia knowledge, help-seeking and service access
  • impact of these components on the experiences of people living with dementia including their social and civic participation, neighbourhood involvement, and overall quality of life. 

What we did

A range of research has been undertaken to monitor and evaluate the project over the two year pilot phase including:

  • Process evaluation and monitoring of activities
  • Interviews and surveys with people with dementia and their carers (2014 and 2016)
  • Consultation with the Dementia Advisory Group and the Dementia Alliance
  • Conduct of two community surveys (2014 and 2016)
  • Conduct of two business/community organisation surveys (2014 and 2016).

Empowerment and inclusion of people living with dementia was considered one of the pilot project’s most important achievements. People with dementia and their carers expanded their role to include advocacy and peer support, training and community education, and networking with local organisations. They represented the project on council committees and were spokespeople at community events and national and international forums.

The project was recognised by the Dementia Alliance International as a gold-standard approach to developing Dementia-friendly Communities because of the establishment of and leadership by the Dementia Advisory Group. In addition, Kiama Council received a National Award for Local Government in the Disability Access and Inclusion category (2016) and was recognised by the World Health Organisation at the 7th Global Conference of the Alliance for Healthy Cities for its commitment to the creation of a Dementia-friendly Kiama.

The project has now entered the second phase, with the aim of moving from ‘dementia-friendly’ to ‘dementia enabling’. This has been supported by grants from local business, charities and an Illawarra Retirement Trust Foundation grant. It is hoped the project will continue its successful education program targeting diverse groups, and provide ongoing social inclusion via community events and activities arranged by the Dementia Advisory Group. To ensure the sustainability of the project, additional avenues for funding are required. It is a priority to continue to engage people living with dementia, and increase membership of the Dementia Advisory Group, to ensure people living with dementia and their carers continue to lead the project. Long-term commitment from local government is also critical.

View more information on this project.


Download the Dementia Friendly Kiama Pilot Project Evaluation 2016 Summary (pdf)


Project team: Dr Lyn Phillipson, Dr Chris Brennan-Horley, Prof Richard Fleming, Dr Danika Hall, Dr Elizabeth Cridland, Prof Helen Hasan


Enable NSW
Duration: February 2016 – October 2016


Enable NSW is the government agency responsible for funding the provision of artificial limb services to eligible clients in NSW. Artificial limb services are provided on behalf of Enable NSW by commercial limb manufacturers. In 2013, AHSRI was engaged by Enable NSW to develop a classification system that could be used to classify and fund the range of artificial limb services provided by Enable NSW. Since that time, Enable NSW has been working with the sector on issues related to the implementation of the classification. In 2015, AHSRI was engaged to continue supporting this work through the development of a pilot study for the implementation of a casemix based payment system for prosthetic limbs in NSW. The NCCC maintained a support role with Enable NSW through much of 2016.

What we did

A pilot study methodology to test the classification system and funding rules was developed for Enable NSW. To develop the pilot methodology we consulted with Enable NSW staff and stakeholders and undertook some analysis of utilisation data provided by Enable NSW.

The pilot design included the following key features:

  • It would be able to test the effectiveness of the system in achieving more streamlined invoicing and payment processes and the performance of the classification itself.
  • It would also be able to identify any potential adverse impacts relating to clinical decision-making, client experience and the quality of the service provided.
  • The evaluation component of the pilot study will be ongoing throughout the pilot period involving a mixed-method approach.

A detailed document on the business rules and guidelines for piloting this casemix-based payment system for the Prosthetic Limb Services was developed. A data dictionary was also developed describing the data collection and variables to be used in the pilot.


Project team: Rob Gordon, Dave Fildes

NSW Department of Family and Community Services - Illawarra Shoalhaven District
Duration: June 2015 - March 2016


The NSW Department of Family and Community Services (FACS) Illawarra Shoalhaven District opened a purpose built “one-stop shop” called One Place in June 2015. It aimed to address the needs of clients requiring support from a range of social service agencies, government as well as non-government.

The Centre provides an integrated human services model with the aim of improving how FACS (housing, child protection and disability services), non-government service organisations and other government agencies can work together for the best possible outcomes for their clients.

What we did

CHSD completed an evaluation of the implementation of the One Place Service Centre in 2016. This evaluation was concerned with the implementation fidelity of the project and the lessons learnt from this implementation that could inform improved service integration. 

The evaluation compared baseline data and post implementation data on the implementation process from FACS staff, non-government organisations and other stakeholders who were involved in the process. CHSD also facilitated a ‘Lessons Learnt’ workshop with FACS staff, non-government organisations and a consumer representative.

One Place provides a basis for improving relationships between the range of service providers. The colocation of services in one setting at One Place improved relationships between many of these service providers. There is still a need for developmental work to address the goal of becoming an integrated centre where FACS and other service providers including non-government organisations can effectively work together.  

Project team: Peter Samsa, David Fildes

Alzheimer’s Australia
Duration: October 2013 – September 2016


The Alzheimer’s Australia Younger Onset Dementia Key Worker Program was established in 2013 in recognition that people with younger onset dementia ‘fell through the gaps’ between disability and aged care services. Forty key workers were employed nationally to support people with younger onset dementia, their carers and family members and to link them to relevant health, aged care, disability and general community organisations. Importantly, the role also included building capacity in those other services to better meet the needs of people living with younger onset dementia. The Centre for Health Service Development evaluated the Key Worker Program between late 2013 and 2016. In keeping with the philosophy underpinning the Key Worker Program, the evaluation directly involved people with younger onset dementia in its design and consultations.

What we did

CHSD was contracted to undertake the national evaluation of the Key Worker Program. A significant focus of the evaluation was placed on national stakeholder consultations which involved over 120 people from all states and territories. Interviews were conducted with people with younger onset dementia and carers / family members either face to face, one to one or in focus groups, or over the telephone. Key Worker Program team members, leaders and program management were also interviewed, as were stakeholder representatives such as service providers and government representatives. In addition, the evaluation team supported the implementation of client assessment tools used within the Program.

In the three years of the evaluation, the Key Worker Program supported nearly 3,500 clients; this included over 1,500 people living with younger onset dementia, and nearly 2,000 carers and family members.

The strengths of the Key Worker Program were the expertise of staff and their enterprise in building capacity within communities to enable people with younger onset dementia to continue to have meaningful lives. The philosophy underpinning the program is about enabling people with dementia to continue to be active participants in their relationships, families, workplaces and communities and not only enhances the life of the individual, but of society more generally.

Download the final report

Westera A and Fildes D (2016) Younger Onset Key Dementia Worker Program National Evaluation: Final Report. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong.


Project team: Anita Westera, Dave Fildes

Duration: January 2013 - December 2016


Recent reports confirm that important factors in retaining and attracting Aboriginal and Torres Strait Islanders into higher degrees by research are the provision of sufficient academic support and social and cultural inclusion (Review of Higher Education Access and Outcomes for Aboriginal and Torres Strait Islander People 2012, Universities Australia 2013, The Bradley Report 2008). The National Indigenous Research and Knowledges Network (NIRAKN) received a four year Australian Research Council (ARC) Special Initiative Grant (2013-2017) to address the urgent need to build research capability relating to Aboriginal and Torres Strait Islander knowledges and perspectives in Australian universities. NIRAKN is a national, inclusive, multidisciplinary hub and spokes model network committed to facilitating and establishing Indigenous-led research. NIRAKN’s research and capacity building activities are designed to contribute to attracting and retaining a new generation of Aboriginal and Torres Strait Islander researchers.

What we did

As one of the collaborating universities, the University of Wollongong made a commitment to support NIRAKN for the period 2013-2016. UOW contributed a higher degree research scholarship and a financial contribution of $15,000 per year to support Indigenous research staff and students to participate in NIRAKN events over the four years of the grant. CHSD staff member Professor Kathleen Clapham is one of the three national health node convenors of NIRAKN and is responsible for the coordination of university-wide activities at the UOW. During 2014 Professor Clapham collaborated with the Faculty of Law, Arts and Humanities to co-host a university wide support group for UOW Indigenous higher degree research and honours students (Supporting Indigenous Research Scholarship), gave presentations on Indigenous research and ethics at various workshops and seminars, and assisted with the establishment of an Indigenous HDR scholarship and provision of financial support for Indigenous postgraduate research activities.

Australian Commission on Safety and Quality in Health Care
Duration: May – October 2016


The CHSD was commissioned to undertake a project to inform the work of the Australian Commission on Safety and Quality in Health Care. The objective of the project was to produce an environmental scan and literature review on the subject of patient-reported outcomes (PROs) and their measurement with a particular focus on the potential purpose and benefits of national-level collation or collection. It was an ‘early stage’ piece of work that may contribute to the development of a framework to support national collation of patient-reported outcome measures (PROMs).

PROs encompass a wide range of measurable outcomes of care from the patient’s perspective, including symptoms, quality of life and functional status. They can be defined as follows: “A PRO is directly reported by the patient without interpretation of the patient’s response by a clinician or anyone else and pertains to the patient’s health, quality of life, or functional status associated with health care or treatment” (Weldring and Smith 2013). PROMs are the tools or instruments used to measure PROs.

What we did

The environmental scan captured the current status of PROMs in the Australian public and private health sector. The analysis mapped what could be found through web-based searching about the current use of PROMs in Australia at the national, jurisdictional and organisational level; explored how PRO information is used at an aggregated level to improve quality and safety in health care in Australia; identified obvious gaps in the collection and use of PROMs nationally; and highlighted existing and emerging trends in the collation and use of PROMs in Australia to improve safety and quality.

The literature review has addressed the research questions, presenting the literature on the rationale for PROMs, mechanisms for collecting PROMs, reported uses of PROMs for quality improvement and other purposes, and the evidence on impacts of PROMs on quality and safety outcomes and implementation challenges. The evidence was found to be strongest for their use in understanding variation in clinical practice, as they can help in determining the relative effectiveness of different treatments and interventions. Good evidence was also identified that the use of PROMs enhances processes within the patient-clinician interaction. The review also described the primary reasons cited in the literature for the adoption of PROMs, and the main mechanisms used internationally for the routine collection and aggregation of PRO information.

Implications for a national approach to PROMs in Australia were discussed, and recommendations for future steps were provided to the Australian Commission on Safety and Quality in Health Care to facilitate improvements in healthcare quality and safety.

View the Australian Commission on Safety and Quality in Health Care's Patient-Reported Outcome Measures (PROMs) webpage.

Further PROMs work

A third component of this program of research was undertaken - a series of interviews with representatives from all Australian jurisdictions and with Australian and international experts. Together, these three pieces of work provide a foundation for the specification of options for the extent and nature of the Commission’s future national leadership role in the area of PROMs.


Project team: Cristina Thompson, Jan Sansoni, Kate Williams, Darcy Morris, Jacqueline Capell and Pam Grootemaat 

Medibank Health Research Fund
Duration: February 2015 – March 2016


The concept of patient-centred care has emerged over the past decades as a central principal of safe and high-quality care, alongside the principles of care which are driven by information and organised for safety. Subacute care, including rehabilitation, is defined as specialised multidisciplinary care in which the primary need for care is optimisation of the individual patient's functioning and quality of life.

Measuring patient experience is regarded as an important component of assessing whether a healthcare system is delivering safe and high-quality health care. However, in Australia, rehabilitation specific patient experience surveys are not in common use.

What we did

A literature review was conducted to inform the project and identify any existing rehabilitation specific patient experience surveys. Only one, the Client-Centred Rehabilitation Questionnaire (CCRQ), was identified.

The seven domains included in the CCQR are client participation in decision-making and goal-setting, client-centred education, evaluation of outcomes from client’s perspective, family involvement, emotional support, co-ordination/continuity and physical comfort. Reliability and validity of the CCQR have been demonstrated in a peer-reviewed journal article.

The research was conducted in three phases, with appropriate ethics and research governance approvals. In Phase 1, five focus groups were conducted at four rehabilitation facilities in NSW, including public and private patients, to assess different aspects of the CCRQ, for example whether the language used was easily understood, the length of the questionnaire and whether the items included were relevant in the Australian context. Based on the focus groups’ feedback, minor modifications to the CCRQ were made.

In Phase 2, the modified CCRQ was implemented in 20 Australian facilities providing adult inpatient rehabilitation across a range of impairments, for example strokes, joint replacements and orthopaedic fractures. Of the 2,053 surveys distributed, 409 were returned. Statistical analysis provided support for a number of modifications to further improve the reliability of the survey. Project data was linked to the usual AROC data submitted by each rehabilitation facility to enable exploration of the relationship between patient experience and rehabilitation outcomes. Analysis showed that the survey item responses were independent of patient demographics, facility sector and patient outcomes.

Reports based on the project survey data were developed and distributed to each of the participating facilities. Phase 3, conducted in March 2016, consisted of a telephone interview with senior rehabilitation staff at these facilities, seeking feedback on the utility of these reports. They reported that the detailed information presented enabled the opportunity for reflection on any gaps between clinicians’ perceptions of the care they provided and patients’ reported experience of that care. They confirmed that the reports provided useful information in an easily understood format which could be used to inform their quality improvement activities.

In summary, the study found that the modified CCRQ is a reliable and valid instrument that organisations can use to support and inform their commitment to person-centred care.

Alzheimer’s Australia (Department of Social Services)
Duration: 2015 – 2016


In 2015, Alzheimer’s Australia, the University of Wollongong, Carers Australia and the National Respite Association were awarded an Aged Care Service Improvement Grant by the Department of Social Services, Commonwealth Government of Australia. The objectives of this project were to promote flexible respite services within existing funded services and to develop models for individualised funding. Specifically this project aimed to:

  • Assess and analyse existing models of respite in new national aged care programs
  • Develop resources and a coordinated communications program to:
    • Promote awareness and uptake of best practice flexible principles in aged care respite provision within current or revised guidelines; and
    • Support and activate choice by supporting consumer understanding of the range of flexible respite available
  • Develop a proposal for the trial of individualised funded respite and an evaluation framework that would inform the future policy development and planning of a trial for the cashing out of respite.

What we did

To meet the objectives of the project we conducted:

  • A literature review
  • A content analysis to identify options for flexible respite in the three new national government programs (Home Care Packages, Commonwealth Home Support Program and the National Disability Insurance Scheme)
  • Key stakeholder interviews with service providers and policy makers.

The aim of these activities was to gain an overall perspective of the impact of community care reforms and on access to flexible respite. They were also utilised to inform the development of a proposal for a flexible respite trial and consultation with consumers and other stakeholders about the trial model.

Other activities that were also undertaken as part of the project included:

  • Interviews and focus groups with service providers and consumers to identify good practice, its contexts, and barriers to delivering and accessing it
  • The development of resources for service providers to promote innovation in good flexible respite practice and an engagement strategy
  • The development of resources for consumers to help bridge the information gap about flexible respite and an engagement strategy.

Australian Commission on Safety and Quality in Health Care
Duration: March – June 2016


The Australian Commission on Safety and Quality in Health Care (the Commission) commenced a program of work about end-of-life care in acute health care settings in 2012.

This work informed the development of new actions about end-of-life care in the draft version 2 of the National Safety and Quality Health Service (NSQHS) Standards. A key aspect of safety and quality improvement is the ability to evaluate interventions and continuously improve systems for delivering care. Indicators for evaluating end-of-life care are needed to support health service organisations across Australia to implement systems that meet the requirements of version 2 of the NSQHS Standards.

The Commission engaged CHSD to undertake a rapid review of the literature to inform the development of quality and safety indicators for end‐of‐life care in acute hospitals. This was in responses to the Commission identifying that there was little robust evidence to guide the delivery of end-of-life care in acute settings which was highlighted in a national consensus statement about the provision of safe and high-quality end-of-life care. The aim of the review was to provide recommendations to inform the development of quality and safety indicators for end-of-life care in acute hospitals.

What we did

Initial discussions with the Commission resulted in a clear understanding that development of quality and safety indicators for end-of-life care should be driven by a patient-centred approach to care delivery and the burden of data collection for the indicators should not be too onerous. The scope of the rapid review was to include structural, process and outcome indicators.

The project was composed of three stages: (1) searching the literature; (2) reviewing the literature; and (3) synthesising the findings and making recommendations to the Commission. The review identified 27 papers describing the development and use of 12 sets of indicators, including a total of 208 indicators. Almost 70% of the 208 indicators were indicators of process, with much less emphasis on indicators of structure or patient outcomes. About 35% of the indicators were based on some aspect of symptom management, with pain, dyspnoea and psychological symptoms being the most frequently occurring symptoms. Three of the quality indicator sets relied on questionnaires to collect data from patients or their families and one set of indicators relied on the prospective collection of clinical data from patients.

The testing and use of the sets of indicators identified by this review had been very limited. None of the work had been undertaken in Australia. The findings suggest that developing and implementing a set of quality and safety indicators for end-of-life care in acute hospitals will require careful thought and a considerable amount of methodological research. Six recommendations were included for consideration, with a particular emphasis on building on the work undertaken for this report.

Download the report

Masso M, Samsa P and Grootemaat P (2016) Rapid review of the literature to inform the development of quality and safety indicators for end-of-life care in acute hospitals. ACSQHC, Sydney.


Project team: Dr Malcolm Masso, Peter Samsa, Pam Grootemaat

Activity Based Funding Taskforce within the NSW Ministry of Health
Duration: November 2015 – March 2016


All NSW local health districts are required to meet the reporting requirements of the District and Network Return (DNR) and the Mental Health Establishments National Minimum Data Set (MHE NMDS). Both of these state-wide reporting systems have been in place for more than 10 years within NSW and are part of the NSW contribution to mandatory national data collections. Due to the overlapping reporting requirements of the DNR and MHE NMDS it was considered that the requirements of one system (the MHE NMDS) could be derived from the other (DNR). This would improve consistency in the reporting of the MHE NMDS and reduce the duplication of effort in double reporting. The NCCC was engaged to develop a reconciliation methodology between the two reporting systems.

What we did

The reconciliation approach involved several activities including a review of DNR and MHE NMDS documentation, stakeholder consultation, and data analysis. The documents reviewed included NSW Health Cost Accounting Guidelines, NSW Health MHE NMDS Guidelines, and other MHE NMDS supporting documentation – provided by the InforMH unit within NSW Health.

The reconciliation methodology was developed based on analysis of DNR and MHE NMDS reporting data from two local health districts for two financial years.

Stakeholder consultations involved staff responsible for the preparation of the current reports within the two participating local health districts.

The reconciliation methodology developed is a stepwise algorithm ready for inclusion in the appropriate NSW Health reporting system. This algorithm could be applied to DNR output to assist in the preparation of reporting data consistent with the MHE NMDS requirement.

It was possible to translate the output of costs from the NSW Health District and Network Return (DNR) to meet the requirements of the Mental Health Establishments National Minimum Data Set (MHE NMDS) and reconcile the two reporting systems.

Silver Chain Group
Duration: June 2016 – October 2016


Silver Chain Group is currently looking to expand its home-based care service across Australia and has recognised the need to better understand the drivers of cost to ensure continued market leadership and sustainability. To achieve this successfully, organisational decision-making requires information about the complexity of client need and ways in which models of service provision drive costs and market competitiveness. It was determined that a casemix-based approach to management would provide the support needed to meet the stated Silver Chain goals and the specifications of a three-phased project were developed in 2016 to address the issue of capacity to adopt such a system. The overall project was described as a casemix capacity development program with duration of 18-24 months.

The first project phase was undertaken in 2016 and this involved a gap analysis of client related and financial information systems in their capacity to support costing and classification development and the skills and capacity of staff to undertake casemix analysis.

What we did

This project included several activities such as a literature review, stakeholder consultations, and review of Silver Chain documentation and data. The focus of the literature search was the variables that could be used in a community care-based classification system and the stakeholder consultations and the review of documentation were undertaken to understand the current gaps and identify priority areas for further development work.

This project investigated the data and information management systems for direct and indirect client, and non-client related activities within Silver Chain Health and their related expenditure. The specific focus of the cost analysis was on the types of services and client characteristics that appear to drive the costs of care delivery. The types of costs that are relatively fixed versus those that are driven by service volume or complexity were also identified.

The key deliverable of this project was a report that identified priority concerns with recommendations for further work. Also included in the report was a draft Silver Chain data model and a first draft data dictionary for client related and financial data collection.


The Silver Chain information system is a rich resource which captures data in sufficient detail to support a classification development and activity based costing. However, significant improvements would be needed in the linking of relevant clinical variables to the services delivered, and in the definition of different types of costs in order to achieve high quality data suitable for casemix analytics. The development of the necessary casemix capacity also requires the establishment of a system of data and information system governance within Silver Chain.

Australian Commission on Safety and Quality in Health Care
Duration: March – September 2016


The Australian Commission on Safety and Quality in Health Care was undertaking a pilot study of a recently developed standardised subcutaneous insulin chart which was designed to facilitate insulin prescribing and management in hospitals. On the new chart all relevant information is recorded in one place, i.e. prescriptions, orders, monitoring and administration. Previously, hospitals implemented local documentation rules with insulin documentation potentially spread across different forms. It was hoped that improved and simplified documentation would reduce risks associated with insulin management for acute inpatients.

CASiH was commissioned to undertake the accompanying statistical analysis. Audit data was collected at six sites across the country at two points in time, before introduction of the insulin chart and after introduction. In total, 379 patients were included, having had 6,729 blood glucose levels tests taken and 1,004 insulin orders recorded.

What we did

Upon receipt of the data CASiH team members worked closely with the Commission to improve the quality of the audit data. The data analysis included a number of statistical tests and subgroup analyses for the different participating sites. Additionally, CASiH provided guidance in interpreting the results. The main findings were that the standardised chart was beneficial for acute inpatients with diabetes. It reduced errors in prescribing and administration and did not result in inferior blood glucose control.

The results of the work fed into a final report by the Commission which is anticipated to be released in the first half of 2017.

Illawarra Shoalhaven Local Health District
Duration: November 2015 - March 2016


The project was part of a broader initiative by the Illawarra Shoalhaven Local Health District (ISLHD) to establish a more strategic approach to the delivery of ambulatory care with the overall aim of developing a framework for governance and decision-making in ambulatory and non-admitted services. Achieving the ‘right’ mix and design of services will ensure patient care is provided in the most appropriate setting, supported by relevant resources and in accordance with the clinical profile and role of each facility. Key drivers for the project included increasing requests for the establishment of new outpatient clinics; the anticipated introduction of the National Disability Insurance Scheme in the local area in July 2017 and the growth of ambulatory models of care.

What we did

The project was limited to a review of specialist outpatient services across the ISLHD, including procedural and medical clinics. The main data sources were the various ISLHD service plans; population and health service profiles; utilisation data for medical consultations and procedures undertaken in outpatient clinics; and interviews with key stakeholders, primarily from within the ISLHD. Main activities included interviews with executive staff from the ISLHD, including clinical directors and general managers.

The outcome of the project was a report which outlined the findings of the review and included a recommended framework for ongoing specialist outpatient service development. The framework was based on principles and business rules to support decision-making for the redesign of existing services and the establishment of new services. The report also included a description of current outpatient services and the findings from interviews with key stakeholders and searching the literature regarding the principles and priorities for outpatient service delivery.


Project team: Malcolm Masso, Conrad Kobel, Cristina Thompson, Jennifer McNamee

Duration: October 2015 - March 2016


CanTeen, through its Youth Cancer Service, identified a need to systematically investigate the professional development needs of the Australian Adolescent and Young Adult (AYA) cancer workforce, drawing on existing national and international research and development work in this field. CHSD was commissioned by CanTeen to undertake this project, which aimed to establish the current status and approach to AYA cancer workforce professional development, identify evaluated and emerging education programs, consider implementation issues and recommend priorities for action in developing a professional development framework for this workforce.

What we did

A literature review was conducted to inform discussions around current and future professional development. Specifically the review examined evidence about the needs of young people with cancer, the professional development needs of health professionals who work with this group, and any evaluated or emerging interventions for building health professionals’ AYA cancer care skills, knowledge and personal qualities. As AYA cancer care is a new and emerging field, the review aimed to include as much of the limited available literature as possible. Therefore, AYA was defined in the broadest terms, encompassing those diagnosed with cancer between the ages of 15 and 39. Literature regarding childhood cancer survivors between these ages was included when it was particularly relevant or addressed a gap in knowledge not yet addressed by more pertinent research. Where applicable, interventions were then rated for their strength of evidence according to the National Health and Medical Research Council expanded levels of evidence for interventions.

Semi-structured interviews were conducted with 23 key informants (eight international and 15 Australian experts), to explore views about training and professional development for health professionals working in AYA cancer care.

The final report presented the major findings from the literature review integrated with the relevant themes arising from the key informant interviews. The report was presented to CanTeen’s Education Training Advisory Group for input into recommendations and setting strategic priorities for professional development.


Project team: Kate Williams, Cristina Thompson, Darcy Morris, Pam Grootemaat, Cathy Duncan, Malcolm Masso

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