Data linkage is a method of bringing information from different sources together about the same person or entity to create a new, richer dataset. (Menzies Institute for Medical Research)

Following are a number of institutions that specialise in providing data linkage services. Some do this as their only activity, whilst others combine this with educational and other support services. This is not an exhaustive list and these organisations are presented in alphabetical order.

AIHW – Australian Institute of Health and Welfare

AIHW is a leading health and welfare statistics agency in Australia. They improve the health and welfare of all Australians by making available information and statistics that can help shape and improve the health of our community through better services and programs.  

Information about current data linkage projects at the AIHW can be found HERE.

ARDC – Australian Research Data Commons

The Australian Research Data Commons (ARDC) enables Australian researchers and the eResearch community access to data intensive infrastructure, platforms, skills and collections of high-quality data.

Two resources of particular relevance are:

• Working with data
• ARDC presentations

Three services of particular relevance are:

1. Nector Cloud. This service provides Australia’s research community with computing infrastructure and software.
2. Research Data Australia is an online portal for finding research data and associated projects, researchers, and data services. You can find, access, and reuse data for research from over one hundred Australian research organisations, government agencies, and cultural institutions.
3. Identifier services create and manage persistent identifiers for research data, research samples, files, documents or other digital objects.

CVDL – The Centre for Victorian Data Linkage

The Centre for Victorian Data Linkage (CVDL) is the Victorian state node of the Population Health Research Network. Based in the Department of Health and Human Services, its main function is to create and maintain linkages within and between Victorian government, health and non-health administrative data collections, and extend the capability for building a nationwide data linkage infrastructure. Data that can be linked are represented in this diagram:

Monash University Registries

Monitoring variation in healthcare is known to support best practice and improve quality of care. However, challenges exist in developing and accessing appropriate data sets on which to undertake clinical quality benchmarking. Clinical registries are increasingly recognised as credible, effective and feasible tools to measure variation and drive quality improvement at the national and jurisdictional health system levels.

Monash University Helix platform

Monash University’s medical researchers and their collaborators are at the forefront of Health, Epidemiological and Translational research nationally and internationally. The University, recognising health data management as part of a crucial infrastructure for its research community, has committed significant investments and established Helix to harness digital innovation for sensitive research data.

PHRN – Population Health Research Network

The Population Health Research Network (PHRN) is a national collaboration that enables existing data from around Australia to be brought together and made available for important research.

Databases include birth, marriage and death records as well as some health data records.

Background

The Australian Health Research Alliance’s (AHRA) Data-Driven Healthcare Improvement met in 2018 and agreed upon eight priority areas. The first of these is to create Learning Health System data hubs (term used previously – incubator hubs). The Monash Partners Data-Driven Healthcare Improvement committee have also endorsed this priority.

Learning Health Systems data hubs (LHS data hubs) use data from clinical encounters and other health-related events, analyse the data to generate new knowledge, and then provide this knowledge to continuously inform and improve health decision making and practice, and patient outcomes. Data hubs require integrated and relevant workforce capacities (informaticians, frontline clinicians, researchers and community members), infrastructure, and governance. Data hubs fit well within the broader Learning Health Systems (LHS) framework.

Further information about LHS can be found, HERE.

Adapted from LHS definitions by the Institute of Medicine (2015) and Nwaru et al (2017).

Monash Partners Learning Health System (LHS)

In 2019 we used a multi-step co-design process to synthesize available evidence. The process included the following steps:

• Stakeholder input, including expert opinion
• Systematic review
• Qualitative research including national and international research and partnership scoping
• Stakeholder workshop

This process produced the Monash Partners Learning Health System (LHS). The LHS contains the necessary elements to enable routine health practice data, from service delivery and patient care, to contribute to iterative cycles of knowledge generation and improvement in healthcare, whereby the whole LHS system is enabled by partnerships across multidisciplinary stakeholders (academic, clinician, community and industry stakeholders).

We define a Learning Health System as a system in which routine health practice data, from service delivery and patient care, can lead to iterative cycles of knowledge generation and improvement in healthcare, whereby the whole LHS system is enabled by partnerships across academic, clinician, community and industry stakeholders.

The vision of the Monash Partners Learning Health System (LHS) is ‘learning together for better health’. In line with the findings of our systematic review and qualitative research, four principles underpin all aspects of the LHS: People, Culture, Standards, and Resources/Infrastructure.

The Monash Partners LHS encompasses four different types of evidence, with each represented diagrammatically in a quadrant of the wheel

• Stakeholders evidence
• Research evidence
• Data evidence
• Implementation evidence.

Other Australian projects

1. Sydney Digital Health Cooperative Research Centre (CRC) – are establishing ‘Implementation Hubs’ or a ‘Living Laboratory’ in conjunction with Westmead Hospital and the State Government Department of Health NSW.

2. Health Translation SA (HTSA) – are working with the Commission of Excellence and Innovation in Health (South Australia) – and plan to establish a Health Informatics Hub. More information will be provided as this becomes available.

International exemplars

1. Health data research UK – plan to establish Digital Innovation Hubs across the UK. This is part of a £37.5M UK government investment in using health data responsibly and safely to accelerate scientific research and digital innovation to improve health and people’s lives.
2. The Learning Healthcare Project – Project run by the Institute of Health and Society, Newcastle University (UK) and is funded by The Health Foundation. Website collates evidence and current applications of Learning Health Systems.
3. IC/ES Ontario, Canada – Provides research-ready, linked health administrative data and analytic tools to guide decision-making and inform changes in health care delivery.
   

Articles of interest
Braithwaite, J., Glasziou, P. & Westbrook, J. (2020). The three numbers you need to know about healthcare: the 60-30-10 Challenge. BMC Med, 18: 102. Australian Stroke Coalition. 

Budrionis A, B. J. (2016). The Learning Healthcare System: Where are we now? A systematic review. J Biomed Inform., 64, 87-92.

Cadilhac DA, A. N. (2017). Quality of Acute Care and Long-Term Quality of Life and Survival: The Australian Stroke Clinical Registry. Stroke, 48, 1026-1032. Clinical Guidelines for Stroke.

McLachlan S, P. H. (2018). The Heimdall Framework for Supporting Characterisation of Learning Health Systems. J Innov Health Inform., 25(2), 77-87.

Menear M, B. M.-P. (2019). A framework for value-creating learning health systems. Health Res Policy Syst., 17(1), 79.

Roundtable, M. I. (2011). Value and Science-Driven Health Care: The Learning Health System and its Innovation Collaboratives: Update Report. Washington, DC: IOM.

Teede, H. J. et al. (2019). Australian Health Research Alliance: national priorities in data‐driven health care improvement. MJA, 494-497.

Working with fair data. Australian Research Data Commons.

National Survey on eMR

This survey is interested in the usability of eMR’s. The usability of electronic health information systems refers to their ability to have a positive impact on patient care by supporting physicians in achieving their goals. These systems should support information exchange, communication and collaboration in clinical work, be interoperable and reliable.

What is the data act? The federal government is about to release new laws to encourage bureaucrats to share your data. The changes could fundamentally fuel the remake of government for the better.

ARDC and HeSANDA are running a series of workshops in order to Consult with clinical trials researchers on the development of a national data asset

The dates and themes are:

• 11 Aug – Research purpose
• 1 Sep – Data content and quality requirements
• 22 Sep – Existing data standards and practices
• 13 Oct – Governance, IT, and other requirements.

The Pandemic Imperative: Clinical Data and Analytics Platform to improve clinical outcomes through point-of-care decision support. The Clinical Data and Analytics Platform (CDAP) will support the Australian response to the COVID-19 pandemic by creating a means to capture a broad range of clinical data and patient reported data spanning the entire patient journey, from diagnosis through management and into long term follow up.

The Digital Health CRC has funded a collaboration between QLD Health, NSW Health, Commonwealth Health, Queensland University of Technology, University of Sydney and Monash University aimed at making use of the resources that each has to benefit the health of the population.

International Population Health Data Linkage Network Conference

Data Linkage: Information to Impact | 27-29 October 2020: Adelaide, South Australia

The conference will bring together a wide range of exciting leading international speakers, researchers, data linkers, data scientists, practitioners, policymakers and consumers to discuss and exchange ideas relating to the full spectrum of data linkage and use of linked data to impact policy and improve health and social outcomes.

Australian Hospitals & Healthcare Association has recently established a new Australian Centre for Value Based Healthcare.

The Australian Centre for Value-Based Health Care has identified a number of resources that may support your work in value-based health care.

ARLINGTON, VA (October 15, 2019) – The Personal Connected Health Alliance (PCHAlliance) and Integrating the Healthcare Enterprise (IHE) have joined forces to simplify the collection and sharing of health data generated by personal health monitoring devices and mobile applications (apps) to improve continuity of care.

Digital Health: The new frontier of healthcare.

Uber’s app will now directly integrate into Cerner’s electronic health record so that providers will be able to schedule patients for pick-up and drop-off for their non-emergency medical appointments in America.

Monash Researchers to explore automated decision-making technologies in new ARC centre.

Here are some links to websites that have interesting News pages:

https://ardc.edu.au/news/

https://www.digitalhealthcrc.com/news-events/

Monash Partners

Monash University has a range of data related educational offerings from short courses to Masters programs. For example the School of Public Health and Preventative Medicine offers a professional education program as does the Faculty of IT. The Library also has useful resources for managing research data.

Sir Louis Matheson Library Monash University.

Monash University. Data Science: Data Driven Decision-Making.

On this Data Science: Data Driven Decision-Making micro credential, you’ll work through practical programming exercises to learn the process of tidying, harvesting and wrangling data and applying statistical models to simulate complex functions that solve a broad range of problems. Using data visualisation techniques, you’ll learn to interpret and explain data to inform your decision-making process and communicate your message to others. You’ll also explore the essential ethical, legal and organisational issues of data collection and management.

This micro credential is a pathway for Deakin’s MBA (Healthcare Management) and a number of other healthcare degrees. Develop your capabilities in digital health implementation and hospital administration. Learn how to implement digital healthcare systems to enhance your management and administration capabilities.

Expand your understanding of the potential for transformative impact of digital health on hospital administration and build your capacity to improve hospital digital information systems and technology solutions from a non-technical perspective.

Monash University post graduate Introduction to Digital Health unit. Introduction to Digital Health is a fully-online credential exploring the intersection between health and technology. You’ll be kept up-to-date with the latest technology and digital trends in healthcare, and discover how to apply them in your workplace. It’s designed specifically for clinicians, allied health practitioners, technicians or those working in professional roles within the health sector.

Australian

ANDHealth
ANDHealth’s primary objective is to create an integrated and connected ecosystem for the development and commercialisation of evidence-based digital health products, bringing together participants from the medtech and pharmaceutical sectors with a broader stakeholder group drawn from the ICT and commercial sectors.

There are a number of training opportunities available through this group.

Australian Research Data Commons (ARDC)

The ARDC support a number of webinars that may be of interest.  An example of these webinars is the Data Linkage series that was led by the Australian Clinical Trials Alliance (ACTA) and the Population Health Research Network (PHRN).  The four-part series focused on:   

• Designing Clinical Trials using Linked Data
• Accessing Linked Data
• Ethical considerations in using Linked Data
• Accessing MBS and PBS data.

For further information visit the ARDC data linkage webinar series.

Certified Health Informatician Australasia (CHIA)

CHIA is a unique credentialing program for health informatics. The CHIA credential demonstrates that candidates meet the Health Informatics core competencies to perform effectively as a health informatics professional in a broad range of practice settings.

CRC webinars

A series of Webinars are available on a number of topics. They can be accessed live or retrospectively.

La Trobe University post graduate degree courses in Digital Health

La Trobe’s digital health courses equip you with the skills and expertise required to work in this expanding and essential field – across environments as diverse as hospitals and private practice, to insurance and the corporate sector.

RMIT have developed a micro credentialing course: Digital Health Strategy and Change.Learn how digital health technologies can drive transformations within your organisation. Create a case for investing in digital health, and develop a change management plan to enable meaningful adoption. Learn how digital health technologies can drive transformations within your organisation. Create a case for investing in digital health, and develop a change management plan to enable meaningful adoption.

Sydney University
Sydney University has developed a free Massive Open Online Course (MOOC) with input from our translation research centres.

The MOOC has been co-designed by stakeholders and subject matter experts from health, education, government and non-government organisations to develop quality learning materials, initially, for foundational level digital health capabilities. It includes four capability domains:

1. 1. Digital Technologies, Systems and Policies
   2. Clinical Practice and Applications
   3. Data Analysis and Knowledge Creation
   4. System and Technology Implementation.

Further details available, HERE

International

MANTRA
MANTRA is a free online course for those who manage digital data as part of their research project.

Warwick University 
The Library also offers good resources for management of research data.

Research data management (RDM) means the storage, curation, preservation and provision of continuing access to analogue and digital research data. RDM is a way of codifying these research good practices in a way that can make it easier for you to conduct your research.

Monash and Warwick University and the Mantra training all have particularly easy to understand information about data privacy and confidentiality as part of their information/ training programs.

Research Data Alliance

This international group of experts have developed COVID data sharing guidelines. These are aimed to help stakeholders follow best practices to maximise the efficiency of their work, and to act as a blueprint for future emergencies.  The recommendations in the document are aimed at helping policymakers and funders to maximise timely, quality data sharing and appropriate responses in such health emergencies.

Digital Health Guide

There is a growing need for health providers to guide patients in the safe and appropriate use of mobile health apps.

The Digital Health Guide provides high quality information about mobile health apps, including what capabilities they have, what conditions they are for, what evidence exists to support their claims, and reviews and ratings from health providers, patients and more.

The Digital Health Guide is currently a subscription-only resource for health providers.

Access to the Digital Health Guide typically costs $100 + GST for a 12 month subscription. However, they offer discounts by negotiation for organisations looking for access for larger numbers of users.

Australian Government open data

Here is a central source of Australian Government open data, with more than 80,000 datasets currently available.

#Datasaveslives. Connected Health Cities are using data and technology to improve health across the North of England.

The International Consortium for Health outcomes measurement (ICHOM)
ICHOM brings together patient representatives, leading physicians and registry leaders to prioritise a core set of outcomes for different medical conditions. These are published in open-access Standard Sets.

Office of the National Data Commissioner – Data Sharing Principles
Making data public online is an excellent way to unlock its potential – anyone can use it and recombine it with their own information. This can be a boon to researchers, business and the government, but the flip-slide of these benefits is the risk that anyone can misuse the data by attempting to identify individuals.

Further information about the Five-Safes Framework is available here: ONDC – DSP’s

The Department on the Prime Minister and Cabinet also has Data Sharing Principles.

This Guide has been written to assist agencies holding Australian Government data to safely and effectively share the data they are responsible for by using five Data Sharing Principles.

SNOMED International
SNOMED International determines global standards for health terms, an essential part of improving the health of humankind.

We are committed to maintaining and growing our leadership as the global experts in healthcare terminology, ensuring that SNOMED CT, our world leading product, is accepted as the global common language for health terms.

Braithwaite, J., Glasziou, P. & Westbrook, J. (2020). The three numbers you need to know about healthcare: the 60-30-10 Challenge. BMC Med, 18: 102. https://doi.org/10.1186/s12916-020-01563-4.

Enticott, J., Johnson, A., Jones, A., Teede, H. (2020), Co-Designing a Learning Health System Framework: Learning Health Systems: Learning together for better health. Inspire Magazine 015: 26-27. https://researchaustralia.org/inspire-magazine/

McGregor, D., Rohne, I., Solman, A., Shaw, T., Yeung, W., Jones, A., Herring, A., Sukovic, S., Culver, A., Shrapnel, J., & Linehan, T. (2018). Curriculum resource co-design and development for a digital health workforce and digital health ready graduates. Health Education in Practice: Journal of Research for Professional Learning, 1(2). Retrieved from https://openjournals.library.sydney.edu.au/index.php/HEP/article/view/13054

Morley, J, Machado, C.C.V., Burr, C, et al. (2020), The ethics of AI in health care: A mapping review. Social Science & Medicine, 260: 113172, ISSN 0277-9536. https://doi.org/10.1016/j.socscimed.2020.113172.

Teede, H.J., Johnson, A., Buttery, J., Jones, C.A., Boyle, D.I., Jennings, G.L. and Shaw, T. (2019), Australian Health Research Alliance: national priorities in data‐driven health care improvement. Med. J. Aust., 211: 494-497.e1. doi:10.5694/mja2.50409

Australian

Flying Blind Volume 1
The Australian health data series, Australian Consumers and Digital Health, focused on the consumer health journey. Includes information about Data terminology, linking and reporting of health-related data and the impact of siloed funding and reporting frameworks on the consumer experience.

Flying Blind Volume 2
This Volume examines Australia’s health and medical research data environment and traces the difficulties that Australian researchers face at each stage of their journey as they attempt to access research data.

International

The Topol Review
Preparing the healthcare workforce to deliver the digital future, as part of the draft health and care Workforce Strategy for England to 2027 – Facing the Facts, Shaping the Future.

Developing health data research innovation hubs, integrating data experts/researchers into health settings to enhance data-driven healthcare and improve health outcomes
Dr Joanne Enticott and Alison Johnson

Developing Monash Partners wide visual representation models for data (data dashboards) for clinicians, managers and consumers, to better access and utilise clinical and/or registry data
Lauren Lawlor and Lavinia Tran

Developing a strategic approach to Natural Language Processing (NLP) across Monash Partners health services
David Ung (from September 2020)

Developing a data harmonisation road map to improve maternal health outcomes
Dr Negar Naderpoor

Developing health data research innovation hubs, integrating data experts/researchers into health settings to enhance data-driven healthcare and improve health outcomes
Dr Joanne Enticott and Alison Johnson

Data linkage to provide near real-time monitoring of cardiac surgical performance – a local pilot for a national process
Adjunct Clinical Professor David Pilcher

Innovative use of AI for antifungal stewardship in patients with blood cancer
Dr Michelle Ananda-Rajah

Developing a data harmonisation road map to improve maternal health outcomes
Dr Negar Naderpoor

Development of a data harmonisation road map to inform linkage of prehospital and emergency department data
Dr Kathryn Eastwood

Victorian Obstetric Anal Sphincter Injury (OASIS) Quality of Care Improvement Project
Associate Professor Sue Evans

Using Linkage To Reduce Avoidable Hospitalisation (ULTRA-GP)
Professor Danielle Mazza

Lung Cancer Clinical Quality Registry: a state-wide approach to monitoring and improving lung cancer care (HREC/16/ Alfred/84)
Professor John Zalcberg