” This committee inquiry received 118 submissions and we heard some very significant points of view in the committee.
We held three hearings. I think that the number of submissions demonstrates the importance of My Health Record to the community and also the importance of getting it right. Also, it’s very clear that the community want their concerns to be heard, and we did hear many.
Although we did hear many concerns, overall it’s fair to say that the purpose of the My Health Record system is supported.”
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” Recommendations : The committee recommends that the Australian Government commit additional funding for a broad-based education campaign regarding My Health Record, with particular regard to communicating with vulnerable and hard to reach communities “
12 of 14 Recommendations see in full Part 1 below
” The ACHWA recommended that consideration be given to funding the Aboriginal Community Controlled Health Services to provide assistance to Aboriginal people to access and manage their record. ACHWA noted that a number of practical limitations would impact on the ability of Aboriginal and Torres Strait Islander peoples to manage the privacy settings on their MHR:
While the client can change the privacy functions, there are issues with Aboriginal people especially those in remote locations having reliable digital/electronic/phone connectivity e.g. with the Helpline, waiting times can be long, the client may not have a phone, and there may be not mobile phone connectivity.101
Extracts from report referring to Aboriginal and Torres Strait Islander Health see Part 2 Below
The Senate Community Affairs References Committee’s report criticised the Australian Digital Health Agency’s information strategy, saying it had failed to give people enough information to make informed choices about the planned opt-out system.
The committee’s recommendations chime with many doctors’ concerns over the current MHR design regarding security and patient awareness.
RACGP President Dr Harry Nespolon said the problems had arisen due to the shift from an opt-in system to opt-out without adequate attention to safeguards.
“It’s clear that the privacy provisions in the current legislation are not sufficient. As it is now, we cannot support it,” Dr Nespolon told The Medical Republic.
“Whether the politicians take 12 months to sort it out, or 24 months, or six months, we would prefer they sort it out sooner rather than later.”
Coalition senators on the committee issued a dissenting report opposing the 12-month freeze and the adoption of default access codes. They argued that the use of access codes would impede clinicians and only pose more security risks if, for example, people were sent PINs by post or email.
Health Minister Greg Hunt, who earlier called the senate inquiry a “stunt”, rejected the call for a 12-month suspension.
But Labor’s health spokeswoman, Catherine King, said the My Health Record should not proceed until public confidence was restored.
She agreed with the report’s contention that “an unreasonable compromise may have been struck between ensuring the utility of the system and safeguarding the privacy and safety of healthcare recipients”.
Senator SIEWERT Continued
People recognise the benefits that a properly—and I reiterate the word ‘properly’—executed digital record will have for both individuals and the broader public health for our community. If properly executed, the system may lead to improvements in the quality of health care and health outcomes for many Australians.
The committee makes 14 recommendations, which, if implemented, we certainly think would lead to significant changes to My Health Record.
The report shows the need for improvement to the current legislation and, in some cases, the approach, and it was one of the bases for which Senators Di Natale and Watt moved a motion calling on the government to extend the opt-out period earlier today until the amended legislation can be passed.
We talk about the opt-out period in this report. Again, I’d like to encourage the government to extend the opt-out period. That’s certainly something a lot of people want to see.
A key theme of these recommendations, and something the committee kept hearing, is the need to ensure that the information in the record is used for a person’s health only, not for the benefit or purposes of an employer—and we heard some concerning evidence about the possibility there; although we acknowledge that that’s, in fact, not the government’s intent—and/or the government to recoup revenue or any commercial purposes.
The committee recommends these changes be enshrined in legislation.
Another key theme was for the Australian Digital Health Agency to, as much as possible, ensure that Australians understand their records and how to use them. It was very obvious that there are a lot of Australians who don’t understand the records or how to use them. A number of witnesses noted that the record appears to be based on the assumption that individuals have a high level of health literacy.
Submitters expressed concern about the ability of the average consumer to opt out of the record or set appropriate privacy settings, and they noted low levels of digital literacy among some groups of consumers.
While the Australian Digital Health Agency and the Department of Health both provided evidence about the information they are providing to consumers about My Health Record, it was notable that many community and consumer groups did not feel that this was necessarily sufficient.
Accordingly, the report recommends that the Australian Digital Health Agency revise its media strategy to provide more targeted comprehensive education about My Health Record.
As I articulated earlier, many people are supportive of the move to the digital health record, but we have to get it right, and that’s what we note in the report.
The committee has listened to the voices of Australians about My Health Record, and we encourage the government to do the same and respond to these recommendations. From the Australian Greens point of view, we remain supportive of the move to the digital health record, but we want to make sure we get it right. I encourage the government to look at these recommendations.
They’re put forward by the committee in the spirit of trying to make sure that we make this system as effective and useful as possible for individuals and the provision of healthcare in our community.
The committee recommends that record access codes should be applied to each My Health Record as a default and that individuals should be required to choose to remove the code. The committee further recommends that the ability to override access codes in the case of an emergency should only be available to registered healthcare providers for use in extraordinary and urgent situations.
The committee recommends that the Australian Government amend the My Health Records Act 2012 to protect the privacy of children aged 14 to 17 years unless they expressly request that a parent be a nominated representative.
The committee recommends that the Minister for Health amend the My Health Record Rule 2016 to extend the period for which a My Health Record can be suspended in the case of serious risk to the healthcare recipient, such as in a domestic violence incident.
The committee recommends that data which is likely to be identifiable from an individual’s My Health Record not be made available for secondary use without the individual’s explicit consent.
The committee recommends that the current prohibition on secondary access to My Health Record data for commercial purposes be strengthened to ensure that My Health Record data cannot be used for commercial purposes.
The committee recommends that no third-party access to an individual’s My Health Record be permissible, without the explicit permission of the patient, except to maintain accurate contact information.
The committee recommends that the Australian Government amend the My Health Records Act 2012 and the Healthcare Identifiers Act 2010 to ensure that it is clear that an individual’s My Health Record cannot be accessed for employment or insurance purposes.
The committee recommends that access to My Health Records for the purposes of data matching between government departments be explicitly limited only to a person’s name, address, date of birth and contact information, and that no other information contained in a person’s My Health Record be made available.
The committee recommends that the legislation be amended to make explicit that a request for record deletion is to be interpreted as a right to be unlisted, and as such, that every record is protected from third-party access even after it is deleted, and that no cached or back-up version of a record can be accessed after a patient has requested its destruction.
The committee recommends that the Australian Digital Health Agency revise its media strategy to provide more targeted comprehensive education about My Health Record.
The committee recommends that the Australian Digital Health Agency identify, engage with and provide additional support to vulnerable groups to ensure that they have the means to decide whether to opt out, whether to adjust the access controls within their My Health Record and how to do this.
The committee recommends that the Australian Government commit additional funding for a broad-based education campaign regarding My Health Record, with particular regard to communicating with vulnerable and hard to reach communities
The committee recommends that the Australian Government extend the opt-out period for the My Health Record system for a further twelve months.
The committee recommends that the My Health Record system’s operator, or operators, report regularly and comprehensively to Parliament on the management of the My Health Record system.
Extracts from report referring to Aboriginal and Torres Strait Islander Healt
4.20 At the same time, the Evaluation noted that the proportion of Aboriginal and Torres Strait Islander people registered with MHR was low and did not change during the trial period. The Evaluation found that this confirmed evidence from focus groups and trial teams that there are particular barriers to the participation of Aboriginal and Torres Strait Islander peoples in rural and remote areas, such as computer literacy, internet access, health literacy and lack of linkages with other specific healthcare programs. The Evaluation noted that neither the opt-out or opt-in trials have provided lessons on how to address the impact of no or unreliable internet access
4.22 The evidence to the Royle Review suggested that there had not been sufficient focus on the needs of vulnerable or hard to reach individuals, who may stand to benefit from an electronic health record.
The committee considers that the Evaluation identified a need for particular focus on the needs of hard to reach individuals, such as those living in rural and remote locations, Aboriginal and Torres Strait Islander people and people and on barriers to participation in the MHR system, such as computer literacy, internet access
4.25 The Evaluation noted the importance of explaining the benefits of the MHR system in allaying individuals concerns about security and privacy.
They most often said that, while they thought that no computer-based systems were totally safe, on balance they thought that the benefits to them, their families and the health system far outweighed those risks.
This attitude held firm across general population, people from culturally and linguistically diverse (CALD) backgrounds, Aboriginal and Torres Strait Islander participants, gender, age groups, varying levels of computer literacy and access to computers or reliable internet. This reinforces the need for national awareness activities which make clear the benefits of the My Health Record system as well as the privacy and security protections.34
4.60 These concerns echo submissions to the Royle Review that argued an electronic health record ‘cannot be described as personally controlled if a population group (e.g. Aboriginal and Torres Strait Islander peoples) do not have the skills or tools to personally control it.’82
4.71 The Aboriginal Health Council of Western Australia (ACHWA) expressed concern that no formal process currently exists to assist people with limited or no access to electronic connectivity and no or limited digital literacy to access and manage their record. The RFDS also noted the lack of technological infrastructure in a significant number of rural and remote locations would impact on individual’s ability to access the MHR system.98
4.72 Submitters also noted that it is difficult for young people and some Aboriginal and Torres Strait Islander peoples to opt-out, because this requires identity documents that they may not have or that may be held by others.99
4.73 ACHWA recommended that consideration be given to funding the Aboriginal Community Controlled Health Services to provide assistance to Aboriginal people to
access and manage their record.ACHWA noted that a number of practical limitations would impact on the ability of Aboriginal and Torres Strait Islander peoples to manage the privacy settings on their MHR:
While the client can change the privacy functions, there are issues with Aboriginal people especially those in remote locations having reliable digital/electronic/phone connectivity e.g. with the Helpline, waiting times can be long, the client may not have a phone, and there may be not mobile phone connectivity.