Let’s make the most of My Health Record. It’s all about our health.
Australia is finally giving serious attention to a vital and long-awaited development of the health system --- the secure use for research and development of the vast fields of information detailing our medical experience made possible by electronic health records.
This “secondary use of My Health Record data” is a development of extreme value to the future of health care and administration. It is a value that must also be protected from abuse, such as invasion of privacy. So the contribution of the consumers’ perspective cannot be understated.
It is why the Consumers Health Forum is hosting a webinar on 16 November into secondary use of My Health Record (MHR) Data as part of a Department of Health public consultation for the development of a framework building on existing privacy laws for this development. Register here.
The primary purpose of the MHR is to ensure that your health information is held securely in one place and can be viewed by doctors and other approved health providers involved in your care with your permission. Currently secondary use of data collected through the MHR is not permitted.
The secondary purpose, or use, of the treasure troves of “mega data” and linking of datasets from such large repositories as Medicare and PBS records has been limited in Australia. Analysis of de-identified data covering large numbers of people reveals nationwide trends of what works and what doesn’t in medical practice, patterns of service utilisation and health outcomes.
Secondary use of data in Australia has thrown light on important matters. It has helped establish the link between birth defects and folate deficiency, has demonstrated how a critical ABC report on statin drugs impacted on use of the drug and how improved access to primary care reduced potentially avoidable hospitalisations for diabetes in the Northern Territory, See the full consultation paper, or the 'plain english' version.
Of particular importance to consumers and the community is that evidence-driven policy and health programs not only boost the delivery of patient-centred care but also give greater assurance that we are investing in high value care, not futile or ineffective treatments and services. De-identified, aggregated data from MHR will generate a rich source of knowledge as the data set builds over time.
As the data are consumer centred, the power of this dataset will only grow. Much of the research at the moment relies on either self-reported data or linked datasets. The MHR dataset will potentially combine service utilisation data such as PBS and MBS and notes by patients and clinicians about their health status, where these details are captured. For example, a researcher will be able to look at consumers’ description of their situations then link this with health service usage. The result should be that consumer perceptions, experiences of care and health care outcomes are placed at the centre more than they currently are.
Patient experiences with new drugs and medical devices which show up unexpected results --- bad or good --- will be potentially ascertained much more quickly because of the monitoring power of a population-wide data basis.
But the other side of this hugely beneficial development is the equally powerful risk if the system is compromised.
The data harvesting required needs to be balanced with protections and controls that are obvious to the public and give people trust that personal clinical and other information about them is protected to extremely high standards, and that there is appropriate recourse if there are privacy or security breaches.
Without rigorous safeguards governing the use and security of MHR data, a breach of privacy or security lapse could seriously undermine the integrity of and public confidence in MHR and its value to society.
The secondary use of MHR data will have much wider potential from mid-2018 when the number of people in the system will dramatically increase from the current five million enrolled. That rise will result from the introduction of opt-out provisions under which all Australians will be covered by MHR unless they take specific steps to opt out.
In developing the secondary use framework there are numerous issues which require and will benefit from the consideration and advice of consumers.
These questions, many of which are raised in the consultation paper, include:
- What secondary purposes should, if any, MHR data be used, or not used for? Should they be restricted to use for administration and clinical development and or understanding life-style factors of individuals and the public?
- Should users be restricted to government agencies and academics or include private business, pharmaceutical and overseas companies?
- What principles should guide the approval of research into and release of data for secondary purposes?
- Who should oversee the use and release of such data? What processes should govern privacy, security and quality of data? Should there be an independent governing body reporting to Parliament?
- What provisions should guide research into linked datasets from different agencies?
CHF strongly supports evidence-based policy and practice and it is crucially important that secondary use data can help maximise quality health care. We know from overseas examples that the power that these datasets can bring is huge.
However, the governance arrangements for secondary use need to be strong and clear. While existing processes such as health research ethics committees can be an important protection, they are far from consistent across institutions.
Australia will now need nationally consistent and appropriate governance arrangements within the framework.
The need for this process to be apolitical is important. The concept of ‘public good’ is central to these discussions and it must be in reality an absolute feature. The public interest test must be the number one principle governing the release and use of My Health Record data.
The creation and maintenance of public registers is important. Consumers have a right to know how their data are being used.
Public accountability would promote effective measures to reduce the risk of non-publication bias. Proposals concerning publication so far largely centre around the methods and analysis, not necessarily the outputs and results. Work created from this data should have to be published, and publicly so (not in a pay per view journal) regardless of outcome.
As the leading health policy analyst, Dr Stephen Duckett, has written: “Government data holdings should be seen as an important public resource to assist in policy-relevant research which will benefit the Australian community. Failure to harness fully the potential of these data sets represents a significant lost opportunity both for policy development and research.”
Main consultation page - https://www.myhealthrecorddata.healthconsult.com.au/public-consultations/
Survey (closes 17 November 2017): https://www.surveymonkey.com/r/MHRFramework
Public Workshops: https://www.eventbrite.com.au/o/healthconsult-10938089385