At present, a minority of Australian have digital health records, and such records are not used routinely. As the number of people with digital records increases, it is likely that they will increasingly be used as a way of documenting and tracking our health.
The implementation of the government’s national My Health Records scheme for digital health records raises many ethical issues.
Concealed information will not become available to you
It is well documented that clinical practices in relation to intersex people were historically based on a model of concealment, including the concealment of diagnostic and intervention details from patients. A recent article by the New Zealand Office of the Privacy Commissioner states that change to these practices is variable and poorly documented. We expect that this variability is also a feature of Australian clinical practices. People whose early medical records have been lost, misplaced, flood-damaged or burned will not find that information restored. Accurate reports of personal historical information may never be digitised.
Relatedly, some historic and continuing medical practices violate the human rights of people born with intersex variations. It is uncertain precisely how this will impact on the documentation of these practices in digital records.
It is also possible that digital health records may contain material unfamiliar to the individuals they relate to. We hope that digital records will never provide the first meaningful disclosure of diagnostic or procedure information to any individual.
At the point at which a digital health record is activated, it will be automatically populated with two years of Medicare and PBS data. Health records will begin to be uploaded and updated from the point of activation. Records must provide an accurate reflection of health information, and this process should provide an opportunity for you to share decision making with your doctors about what is uploaded.
Disclosure of My Health Record data
You can hide specific medical records if you wish, and current rules state that this will apparently only be visible to the doctor that created the record. You can also create a PIN access to your health record. In certain limited circumstances, including emergency and legal contexts, then the details in your record may be disclosed to third parties.
If you are in a situation where misconceptions about intersex variations or other reasons mean that you prefer not to disclose an intersex trait to a partner or other family member, and in particular if you otherwise routinely share personal information, then consider whether or not you wish to have a digital health record.
It is possible that the inclusion of comprehensive health data will lead to inappropriate questions about your body, including questions irrelevant to a current health issue. This is an experience that some intersex people already report. It is possible for you to limit which healthcare providers can see your health information but there are situations where this may cause unnecessary complexities or place additional burdens on you.
Concerns have also been raised about the security of My Health Record data, including both deliberate hacking and also cultural issues around a lack of security controlling access to computing equipment in diverse medical settings.
Secondary data use
Government guidelines on uses of data in My Health Records was published on 11 May 2018. These will permit the use of “de-identified data for research or public health purposes”. Secondary uses of identifiable information will also be permitted “with the consent of the individual”.
People with characteristics described by individual diagnostic terms for intersex variations are uncommon. Previous research involving intersex people in Australia has found that diagnosis and age or gender may be sufficient to identify some individuals. The more correlating information that is disclosed, the easier it is to identify persons. Attempts ordinarily taken to de-identify individuals may thus not be successful.
The uses of secondary data are also of concern. Intersex Human Rights Australia has historically raised concerns about community and clinician differences in opinion about the purpose of clinical research on intersex people. Clinical research, for example, is often intended to assess cosmetic genital appearance, justify early genital surgeries, or provide data to facilitate genetic testing including genetic deselection. Community priorities may instead focus on long-term outcome data, access to appropriate healthcare services, documentation of human rights violations, the use of appropriate control groups, and socio-economic research. However, there is no way for individuals to control the direction or orientation of research using My Health Record data.
According to Department of Health documents on secondary data uses, the government is still determining how to implement secondary data access, with the first release of data anticipated in 2020.
If you wish to have a My Health Record and opt out of secondary data use, there will be a “consumer access control mechanism” within the Record where you can opt to “Withdraw Participation”.
The opt out process
Please consider any risks to you and your family, as well as any benefits, in your decision-making on your health record. You can opt out if you choose: in the middle of this year, digital personal health records will change from an opt-in scheme to an out-out scheme. This means that, at some point, you or your doctor will activate a digital health record for you unless you choose to opt out.
Once created, can also cancel a digital health record or re-activate a record as you prefer. You should also note that the rules regarding My Health Records have already changed from an opt-in scheme to an opt-out scheme, and there is no guarantee that current rules (including rules regarding data already in a Record) will not change again in future.
This article was originally drafted on 14 March 2018, It was updated on 1 July 2018.