3. High-quality data with a commonly understood meaning that can be used with confidence.
Below is a summary of some of the actions government, clinical, technology, industry and advocacy organisations told the Australian Digital Health Agency are already underway to ensure the health system is producing high-quality data with a commonly understood meaning that can be used with confidence.
Ensuring clinical systems talk to each other
Healthcare providers and health organisations want their systems to communicate more easily with other systems outside their organisation’s boundaries. State and territory health departments are facilitating and capitalising on interoperability through programs of work to update clinical information systems.
Queensland Health has established the Interoperability Project which aims to implement new systems and services as foundations for interoperability across the state. Examples of these foundations include a new integration platform and the creation of standards-based foundational information services which will underpin corporate, administrative and clinical applications. Queensland Health aims to use its considerable experience in data standardisation and data analytics leading to clinical quality improvement to provide a scalable solution for other jurisdictions.
NSW Health will continue the implementation of enhancements to its foundation electronic Medical Record (eMR) system, which has already been implemented across the State. The eMR2 program provides additional functionality to the foundation eMR and has been implemented in 154 hospitals in NSW, supporting clinicians with direct and timely access to the information and tools they need to provide safer and more coordinated patient care.
The Northern Territory Government is investigating the feasibility of a change in medical record modality with the conversion of all paper-based medical records into digital format to facilitate installing an up-to-date, accessible and highly available single authoritative source of client identifying data to be accessed by all the Department’s clinical information systems.
The Victorian Government is defining and endorsing a maturity model and baseline for the Victorian Public Health Sector health services, adapted from HIMMS. This will define funding and adoption of clinical capability for the sector, including interaction with national initiatives. WA Health is trialling mechanisms to assess the level of digital maturity (the extent to which they are supported by the effective use of digital technology) of WA Health Service Providers to inform strategic and investment decisions.
There is a layer of complexity in exchanging information in the health care sector that is not experienced in other sectors. To leverage the significant investment in information systems and technology across the health sector, the Australian Digital Health Agency will lead a National Interoperability Strategy consultation that will help determine agreed interoperability standards, an implementation roadmap, a conformance scheme and digital maturity measures to be developed using a consultation and co-production process.
Interoperability is a key priority for the Australian Medical Association which has developed 10 Minimum Standards for Communication between Health Services and General Practitioners and other Treating Doctors which outlines the guidelines to ensure that a patient’s care is safe, effective and efficient when communication between all medical and health professionals who provide care to the patient is required. The guidelines state that health services should have secure and reliable electronic systems to send and receive information to and from the Health Service and General Practitioners and other treating doctors.
The issue of image sharing by clinicians across different health providers is being tackled by the Australian Diagnostic Imaging Association and the Royal Australian and New Zealand College of Radiologists. In partnership they are to put together a roadmap towards developing and deploying the architecture and platform to support image sharing.
Generating high quality health data
There is an underlying need for efficient use of high-quality data to enable future developments including precision medicine and genomics and the tracking of the efficacy of medical devices.
Clinical terminologies, especially SNOMED CT-AU, Logical Observation Identifiers Names and Codes (LOINC) and the Australian Medicines Terminology (AMT) will continue to play a key role in Australian healthcare, ensuring that medicines and clinical concepts are identified consistently across disparate clinical systems. These terminologies have been implemented and deployed in Australian healthcare sites and clinical applications, including public and private hospitals within Victoria, Northern Territory, New South Wales, Queensland, Tasmania and Western Australia, and various systems managed by ACT Health.
Queensland Health has established a statewide clinically led Data and Analytics committee covering the entire state that will drive a culture of sharing and innovation and ensure Queensland is flexible to change in a digitally enabled environment, providing localised population health data to inform preventative action and planning through use-friendly, interactive, visual online delivery. Queensland Health is also continuing to work towards applying supply chain international standard product descriptors (GS1 Global Trade Item Number—GTIN) to enable future tracking of medical consumable products through to the patient if needed. ACT Health is also implementing GS1 Standards for positive patient identification for pathology ordering and collections.
NSW Health will continue to progress the NSW Health Analytics Framework, which will drive broader and more sophisticated analytics use to better support evidence-based decision making and analysis across the NSW health system. This work will contribute to the achievement of better health outcomes and underpin improved health system planning and performance.
Primary Health Networks in Australia have the ability to build a shared information platform to assist all parts of the health sector to make timely and well informed decisions. These platforms will increase data linkage and analytic capacity in concert with fostering the demand across the sector. It will also give a more complete picture of population outcomes, patient experience, service utilisation and system performance. This data could be integrated into the My Health Record for example or through other technologies.
Research Australia is partnering with HealthConsult and iDataMap Pty Ltd to create a consumer-driven lake of health data with the objectives of delivering real-time health information to consumers, and promoting consumer understanding of the value of sharing health data with health and medical research workforce. The project will involve the use of devices such as wearables and apps to capture health and wellbeing data directly from consumers. The project is in proof of concept stage with a view to a fully scaled project in 2020.
Ten Australian Government agencies will also spend about $20.5m from their existing allocations for implementation of the new data governance arrangements over the forward estimates. The Data Integration Partnership for Australia is already bringing together high-value data assets from across the public sector, including those developed by Health, Education and Social Services, to support analysis of a range of difficult policy problems. Four Analytical Units within the Australian Public Service are now established and undertaking projects to make best use of such data.
The Australian Government has also allocated $65.1m over four years to fund the new data sharing and release arrangements, including the establishment of a National Data Commissioner and efforts to create a new consumer right to access personal records from private sector companies. $20.2m is allocated to the Australian Competition and Consumer Commission to assist in determining the costs and benefits of designating sectors that will be subject to the Consumer Data Right, and to develop and implement rules to govern the data right and the content of data standards.
The MDS Validator has been developed by Strategic Data Pty Ltd and is an extensible, web-based application for determining the validity of large data sets. It has been developed for the Department of Health, and its current users include the AIHW and the Australian Mental Health Outcomes and Classification Network (AMHOCN).
Patient information is needed for research to help improve the delivery of health services and increase our understanding of diseases, their treatments and side effects. To enable better access to patient information, Queensland Health has established the Giving InFormation To Research (GIFTR) initiative, which gives patients admitted to certain Queensland public hospitals the option to consent for their medical information to be used in GIFTR health research. The information will only be used for GIFTR approved research projects considered to be low risk and non-interventional. No information that could identify an individual is made public, and no physical participation is required.
High quality data ready for use
Organisations that represent Australians with chronic illnesses and other health conditions recognise the value of using data to improve the lives of the people they represent. The use of historic data could mean clinicians can provide consumers with tailored healthcare pathways and a better understanding of medication use.
Western NSW Local Health District’s Health Intelligence Unit provides a central hub of expertise to coordinate and provide analysis of data and interpretation of information to inform clinical and operational decision making and support a collaborative approach to health and social care planning, delivery and evaluation in Western NSW. Similarly the Australian Primary Health Care Nurses Association works closely with the clinics to improve the quality of practice data and it interpretation of local population data to maximise the potential information and data to better manage patients with chronic disease.
Hospitals and health facilities are also looking for digital solutions to help them better predict emergency department patient arrivals, their medical urgency and specialty, admissions and likely discharge times. A partnership between Austin Health in Victoria, CSIRO and Health IQ (now part of Telstra Health) has developed a Patient Admission Prediction Tool (PAPT), which uses data analytic algorithms to predict demand for hospital services.
Effective delivery of genomic medicine relies heavily on good data management and sharing. The Joint Committee on Genomics and Digital Health was formed in 2017 by the Australian Digital Health Agency and the Australian Genomics Health Alliance to provide advice on the future development of Australia’s digital health foundations to support the advancement of precision medicine. As part of this on-going program, the Joint Committee has established a National Genomics Data Infrastructure Sub-Committee which is charged with developing recommendations for a network and data storage model for a nationwide clinical genomics data repository. The sub-committee will consider the integration of genomic data and test results into the My Health Record system.
The CSIRO’s Australian e-Health Research Centre (AEHRC) runs a health and biomedical informatics program that includes high-throughput genomic data analysis and computational genome engineering, as well as high performance computer systems. The AEHRC health informatics research includes using artificial intelligence and machine learning to support the integration of genomic information into health care systems. Key to this is ensuring interoperability with existing patient management systems. AEHRC is part of CSIRO’s Health and Biosecurity business unit, which includes research into epigenetics, nutritional genomics and wellbeing.
Over 650 general practices and 3,500 general practitioners Australia-wide are currently participating in MedicineInsight, a general practice quality improvement program developed and managed by NPS MedicineWise. MedicineInsight is the only data system in Australia of its scale that extracts complete, all-of-practice, clinical data into a dataset of longitudinal records, enabling powerful analytics and insights. MedicineInsight is being used as part of the Hunter Alliance Diabetes program to help GPs identify complex patients, monitor their patients over time and see how their practice compares with other practices regionally and nationally
Multiple Sclerosis Australia is in the early development stages working with PHNs to provide gold standard care pathways for multiple sclerosis to ensure early diagnosis and early treatment to minimise the impact of the disease. They are using the recommendations in the Brain Health: Time Matters report which references using data to help monitor disease activity to become central to the management of MS.
Australasian Sleep Association are endeavouring to introduce a universal request form and national sleep data repository. This data to be utilised in the design of the optimal health care models that deliver the maximum healthcare outcomes in an affordable and accessible way for consumer.
National data on cancer treatment displays at a population level, what treatments are received following a diagnosis of cancer. Stage, Treatment and Recurrence (STaR) is an initiative of Cancer Australia in partnership with AIHW and jurisdiction registries, this initiative will improve the collection, access, analysis and reporting of national cancer data that will then provide clinicians information on patterns of cancer care and can further their understanding on unwarranted variations in cancer outcomes.
The Australia Cystic Fibrosis Data Registry has been collecting patient health outcomes for 20 years and provides easy access to data and reports for research and statistical analysis. This ensures critical data is collected and analysed and helps review trends, track clinical activity and better monitor patient care.