CHF supports evidence-based policy setting and believes the MHR data set represents a rich national data set that can be de-identified, aggregated and made available for analysis. Its use and application to research in the public interest should be balanced with security and privacy safeguards that meet high standards.
The development of a framework for to the secondary use of My Health Record data is a development of extreme value to the future of health care policy and administration. We value the wide consultation that is being conducted, and look forward to ongoing and clear consultation as the framework develops.
CHF recognises the immense public good that can be achieved through the secondary use of MyHealthRecord data. 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, experiences of the system and health outcomes. 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 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 beneficial development is the equally powerful risk if the system is compromised and/or public trust is eroded through lack of a sufficiently robust framework. We would urge that the framework contains a clear and unambiguous set of principles to guide the secondary use of data and welcome that the need for these is acknowledged in the consultation paper. These should be developed in consultation with consumers and other interested parties.
The key guiding principle should be that the decision maker should be assured that the release is in the public interest. 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. Under no circumstances should data be released to be directed to purposes where the gain is solely commercial.
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. Without rigorous, transparent 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.
See the attached document for our specific recommendations.