Australia holds high quality digital health data that are well coded and structured to be of incredible value to health and medical researchers. In addition to well organised structured data sets, there are vast amounts of untapped resources in the form of unstructured data such as texts, images, audios, and other digital data streams from a range of personal devices and monitors, much of which are unused.
In spite of the abundance of digital data, Australian health and medical researchers spend several months and even years to assemble data required for their research. This has direct impact on advances in both health and medical science and the development of the Health and Medical Technology and Pharmaceutical sectors.
Research Australia’s annual consumer surveys demonstrate that Australian consumers are willing to share their health data to support research. However, this is not reflected in the current restrictive environment where Australian health and medical researchers face a myriad of problems as they navigate a complex environment enmeshed in legislative, ethics and other barriers around data accessibility for research. Very often these obstacles result in long delays where research funding almost runs out, forcing many researchers to abandon linked data studies and make do with small data sets or seek overseas data banks to address their research questions.
Delays are caused by a range of factors. The fragmentation of health services delivery across primary, secondary, hospital and allied healthcare settings produces an equally fragmented data environment. Further barriers are embedded in a health and medical research ecosystem comprised of complex funding and ethics approval processes, ad hoc policies and data governance strategies that differ across state and federal data custodians. These processes and policies lack consistency and are often not transparent to researchers, causing inordinate delays in getting necessary approvals and access to health and medical research data.
The recent public response to the implementation of My Health Record (MHR) is an indication of a lack of consumer trust with the way the authorities plan to implement the MHR. This lack of trust should not be confused with an actual breakdown in technologies that deal with privacy and security of data, access controls and safeguards around data protection.
Ensuring transparency and clarity around data policies and processes is vital to building a trusted environment for the Health and Medical Research (HMR) sector to deliver real value to Australian healthcare consumers.
Consumer-driven transformations that have occurred in other sectors have not occurred in health. We are flying blind. Clinicians practice without knowing the full context of their patients or their outcomes. Care is generic rather than personalised. Funders pay for interventions of unproven or negative value. Consumers lack access to solutions and information that are commonplace in other aspects of their lives.
Expediting access to HMR data is a real and urgent issue. Australia needs to embrace a nationally consistent, streamlined approach that embeds privacy, security and confidentiality by design. The privacy by design approach needs to encompass the use of data as well as data products such as analytical and predictive models that have the capacity to support preventive and precision healthcare.
As part of background research for this report, we reviewed the research environment and the best practices of several countries around the world including the USA and the UK. These have guided us in presenting a vision of a twenty-first century health and medical research environment. Our vision combines privacy protection, data security and streamlined governance processes to create a research environment capable of supporting our future health system. HMR has a vital role in helping shift the focus from reactive, acute care to proactive and preventive healthcare that can be translated into policy and practice without inordinate delays.