This blog is totally independent, unpaid and has only three major objectives.
The first is to inform readers of news and happenings in the e-Health domain, both here in Australia and world-wide.
The second is to provide commentary on e-Health in Australia and to foster improvement where I can.
The third is to encourage discussion of the matters raised in the blog so hopefully readers can get a balanced view of what is really happening and what successes are being achieved.
Tuesday, July 10, 2018
With myHr Opt-Out Coming More Are Seemingly Concerned About The Personal Risks Of The System.
I came upon this a few days ago from The NSW Users and AIDS Association (NUAA)
Below is a statement by NUAA on the My Health Record — a new initiative by the federal government to create an online summary of your health data. A range of groups and experts have raised serious concerns about privacy and security of the data. Everyone will get the chance to opt-out over a three month period from July 16 to October 15, you can register here to receive for information on opting out. At this stage, NUAA recommends if you have concerns, to opt out.
Please read the statement for more information, check out a collection of articles or get in touch at firstname.lastname@example.org or phone (02) 8354-7300 or free call 1800 644 413 if you have any questions. We will be supporting community members to opt out when more information is available on the process.
What is the My Health Record?
The My Health Record is an online summary of your personal health information. The record will include:
Test or scan results
Medical conditions and treatment
It will NOT include clinical notes. It will include up to two years of Medicare data. Tests and scans that took place prior to the record being created will not be added. Tests and scans that take place after the record has been created will be added.
You will be able to add personal health summaries, allergy information, care plan information, Indigenous status information and other personal information you choose to share.
What are the risks of My Health Record?
Once a My Health Record has been created, it will be available for government agencies to access, you cannot de-register but only de-activate the record. The health information can be disclosed to a range of parties other than you, your representative and your doctor including operators of the IT system supporting the record and their contractors. The information can also be disclosed for law enforcement purposes. If a health care worker is of the opinion that there is a serious threat to an individual’s life, health or safety or they believe disclosure is necessary to prevent a serious threat to public health or safety, they can disclose information in your My Health Record.
The provisions in the My Health Record act are very broad and there are a number of circumstances where your health information can be shared with other people or agencies, including law enforcement or community services. The circumstances under which your data can be disclosed are very widely defined.
What is the benefit of My Health Record?
The My Health Record will allow medical professionals full access to your health information. This information may benefit you by improving your care and support greater coordination of care. It may reduce duplication of tests and benefit the health system as a whole.
What are the risks of My Health Record for people who use drugs or who have had hepatitis C?
A broad range of health care professionals will be able to access your health information including prescriptions and pathology results. The reality for many people who use drugs is that they experience high levels of stigma once our history of drug use, treatment for issues with drug use or exposure to hepatitis C is known. Many of us cannot access adequate pain relief or experience discrimination based on drug use or hepatitis C status. The My Health Record will make this information more accessible to a very broad range of health care providers including dentists, pharmacists and hospitals. The reality is that many in our community are denied health care based on our drug use and this record has the potential to increase our experience of stigma and discrimination.
The other risk of the My Health Record is that should this information be requested by law enforcement, it will be held in one repository. If you have a positive drug screen at any facility, this information will be easily accessible.
What is NUAA’s recommendation?
We recommend that at this stage, if you have any concerns about the above, you opt out.
How do I opt out?
You will have three months to opt out, from the 16th of July to the 15th of October, 2018. At this point, you can only register for updates on opting out. NUAA will support the community to opt out during the opting out period. Register for information on opting out here.
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.
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.
I just provide these to point out the risks of the myHR if you are part of a minority that may be discriminated against if info you wish to keep private is unwantedly or accidently disclosed. The number of people who are planned to have access to the system makes unwanted or malicious disclosure almost inevitable over time.
There are many people who have things in their medical / health past who can be affected – think those with comments on mental health, abortion, STIs and so the list goes on and these individuals must really be warned about the potential consequences so they can make an informed decision. Similarly people who need to keep their address secure (AVO's etc.), who are well known etc. should think about staying away.
I can see future class actions if this is not done properly. The ADHA has been warned.