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My Health Record

 

Information about the My Health Record

The My Health Record system is an Australian Commonwealth government program designed to extract parts of your medical and health information and put them in a new system the government controls. It was originally designed for you to voluntarily opt-in (which few did) but in 2016 the government announced its intention to make it opt-out, whether you want it or not.

This page contains information about My Health Record (it was previously called the "Personally Controlled Electronic Health Record" (PCEHR) from 2012 to December 2015), and other electronic health record systems generally available to the public. If possible we include direct quotes and a link to the original, often government, source. We also include our responses and observations separately.

APF has another page containing detailed information on our campaign to let people know just what the government is doing with your health information and the risks they are taking with that information.

APF has major concerns that the federal government is being less than forthcoming about the My Health Record system. Its claims are sometimes simply incorrect, or misleading. In other cases they don't tell you everything about the system. Relevant facts may be left out, glossed over or obscured. These include things which may raise concerns or prompt you to think about opting out, or taking other actions (such as creating a pseudonymous registration, or even signing up and ensuring the record is empty).

Failing to draw adequate attention to possible side-effects, contra-indications or risks is improper and illegal when seeking your opt-in consent for medical treatment. We think a similar standard of frankness and openness is essential for a tricky opt-out consent process for a medical records system which some people may neither know about nor want, which has little or no clinical value, and which comes with unresolved privacy, confidentiality, information abuse and data security risks."

This page contains facts and information about the My Health Record and other health record systems that are generally publicly available. Wherever possible we have included direct quotes and a web link to the original. We may also include observations which will be clearly identified as such.



Table of Contents

Government Information on the My Health Record

What is the purpose of the My Health Record?

What control over access do you really have?

A bit of history of the health record

Does the My Health Record utilise best practice regarding the collection of Patient Data?

What should a good Health Record look like?

Is My Health Record really for use by HealthCare Professionals when you consult them?

Are doctors happy with the My Health Record System?

Are lawyers happy with the My Health Record System

How can I be sure information in the My Health Record System is up to date?

How Secure is Your Health Data?

Who owns your health data?

Can you correct the data in your health record?

How do you resolve a dispute or disagreement between authors of material in your health record?

Is the government going to sell your health data?

Does the government have plans for other uses for your health data?

Are there alternatives to the My Health Record System?

The 2016 Opt-out trials

Claims about the Trials

Public Awareness Campaign for the trial

What does Parliamentary Joint Committee on Human Rights Think of the Trials?

Other Issues

What other people are saying about Digital Health initiatives. (references)

Links to other pages


Government Information on the My Health Record

The My Health Record website. This is where you can see what the government is saying about the My Health Record.

The government says:

"We will select people to have a My Health Record automatically created for them based upon their address as it is known to Medicare/DVA on 3 March 2016.

We will automatically create a digital health record for these people unless:
There may also be administrative reasons that a record may not be automatically created for a person initially selected above."

Reference:
https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/got-a-letter#i2

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What is the purpose of the My Health Record?

This is from the Explanatory Memorandum that supports the eHealth Legislation. It is the most reliable document that explains what the government is trying to achieve with My Health Record.

"1. RATIONALE FOR GOVERNMENT INTERVENTION

The annual Commonwealth costs of healthcare are forecast to increase by $27 billion to $86 billion by 2025 and over $250 billion by 2050. Productivity improvements such as those that can be delivered by eHealth are needed to help counter the expected increases in the unit costs associated with the delivery of healthcare. Leveraging eHealth is one of the few strategies available to drive microeconomic reform to reduce Commonwealth health outlays.

The Australian Government implemented the PCEHR system as a first step towards overcoming some of the issues facing healthcare arising from the fragmentation of health information. Health information is spread across a vast number of different locations and systems. In many healthcare situations quick access to key health information about an individual is not always possible. Limited access to health information at the point of care can result in:
The PCEHR system has, however, not realised the full benefits of such a system in its first two years. While the PCEHR system has the potential to deliver real benefits, some significant design and policy changes need to be made in order to accrue these benefits in a reasonable timeframe.
Government has historically sponsored the development of infrastructure services like this to reduce the burden on business, and remove the possibility of creating further rail gauge issues. Ongoing refinements made by government to streamline these services will bring about even greater efficiencies, which can be leveraged and further innovations made possible for the benefit of all Australians."

Observations:

Is it likely that the My Health Record will be used at the point of care? Possibly, but not likely.

In reality, and in most cases, a health professional seeing a patient will use their own health record system. As an example see NSW's Electronic Medical Record. And have a look at what NSW has been doing in the Sydney Children's hospital. This presentation was delivered in 2010, well before the PCEHR was ever released. It's aimed at clinicians at the point of care. It shows the My Health Record for what it is - a dumb and useless repository of badly managed documents with no clinical value.

Existing communications mechanisms can be used to transfer patient data from one provider to another, especially when the primary health professional has requested the test or opinion. A dumb central repository of health data is unlikely to add any value over and above a communication system. And the government insists the My Health Record system is not a communication tool.

How about the other claims for the My Health Record system.

Will it reduce adverse drug events? Possibly, if a health professional wades through all the prescriptions listed on the patient's PBS record. However, the PBS record, along with any other data in the system cannot be relied on to be complete. If a patient takes non-prescription drugs, or for whatever reason does not claim prescription drugs via the PBS (e.g. they may be given them in hospital or by their GP) they will not show up in the PBS listing.

Your relationship with owners of health record systems.

When you see a GP or specialist or when you visit a hospital, they keep records on you. This seems entirely reasonable; you have a healthcare relationship with the health carer. However, what healthcare relationship do you have with the Federal government? The answer is simple and self evident. You have none. So the big question is this: Why is the Federal government insisting that you give it all your health data when they play no part in your healthcare?

Their claims as to the benefits of My Health Record do not hold water; real healthcare record systems deliver the real benefits. Either the Federal government is so naive it doesn't understand how health record systems fit into the healthcare process or they have ulterior motives.

Answer to "What is the purpose of the My Health Record?"

It is unclear exactly what outcomes the My Health Record is supposed to achieve. The rationale outlined above is not a clear set of goals. Compared with "real" health record systems one can only guess that it's only purpose is for the government to monitor and surveil its citizens.

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What control over access do you really have?

In Health Minister Sussan Ley’s recent media release she says:

“patients would have ultimate control over who accessed their information”.

Observations:

Health Practitioner Access

Looking first at the access that health service providers have to your health data.

The government's website says you can set controls so that only certain organisations can see your record.

The audit trails only show the organisation, not the individual.

This is an exaggeration at best and a gross misrepresentation of the facts at worst.

On the government's web site it answers the question: "I am a General Practitioner, can my staff access a patient's My Health Record if I am at a hospital and not at the clinic?"

"Yes. The staff at your Healthcare Provider Organisation can access My Health Records as long as they are authorised users, even if they do not have an Healthcare Provider Identifier-Individual (HPI-I) identifying them as a healthcare provider.

The My Health Record system entrusts a participating organisation to grant access to ‘authorised users.’ An authorised user must be an employee who has a legitimate need to access the My Health Record system as part of their role in healthcare delivery.

When authorised users without a HPI-I access the My Health Record system, they are only permitted to access the records of patients with whom they are involved in delivering healthcare services. All access to the My Health Record system is with the patient’s initial consent and is audited.

Authorised users without an HPI-I cannot be listed as the author of a clinical document submitted to the My Health Record system."

Observations:

So it comes down to trust. The system cannot stop unathorised access, patient's cannot control access. A GP's staff (undefined, it could be the temporary receptionist, looking up something the temporary nurse has been asked to find out about, by the GP) can legitimately access data in your  health record. They are "involved in delivering healthcare services".

The access controls that the patient can set (and it is expected that very few will set any) only apply at the organisation level, not for a specific health professional. So when the government tells you that you can control who sees your record and that there is a log of who accessed it, they are being loose with the truth.

Shared Health Summary and Personal Health Summary Access

You cannot set access controls to a Shared Health Summary or Personal Health Summary - this little gem is hidden away in the section on privacy: https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/privacy-statement under "I have or I am getting a My Health Record or I am a representative", "Who do we disclose information in your My Health Record to, and why?", "Access Controls"

The PCEHR System Concept of Operations  (a design document that was circulated for feedback in 2011) under Summary of feedback received contains this

Many submissions from healthcare bodies and healthcare professionals requested that critical health care information (e.g. allergies) be made always available to healthcare personnel; however, there were a number of submissions from members of the public that supported having the ability to keep some data private.

The response is under Key changes made and says:

The previous version of the Concept of Operations ensured that the Shared Health Summary was always accessible and could not be marked for ‘limited access’. This position has not changed.

In other words, they have provided a "get-out" clause to health care providers so that they can put information into a document that cannot be controlled by the patient, in spite of what the Health Minister claims. Without commenting on the merits of either view, what is concerning is the apparent inaccuracy of the Health Minister's statement

Reference:
Concept of Operations: Relating to the introduction of a Personally Controlled Electronic Health Record System
September 2011 Release

System Operator Access

What is even more worrying is what they are not telling you about the other ways in which your health data can be accessed. If you read the legislation that allows the government to run the My Health Record system you discover that there are a few clauses that undermine the claim of “ultimate control”.

The area where individuals' privacy is most at risk is the System Operator's Call Centre.

At the moment the System Operator is the Department of Health and the Call Centre is run by Medicare.

Call Centre operators have unrestricted access to all of a My Health Record. Even if you have canceled your registration the data still exists in the system. It is also likely (because the government hasn't told us otherwise) that even data you have "removed" is still available to the operators.

This page has more details about the My Health Record Call Centre, including that the government has failed to deliver a framework for defining how the Call Centre would protect privacy and that it would be backed by legislation.

There is also Section 70 of the legislation which allows the System Operator to give data from the system to Law Enforcement and Revenue Protection agencies.

Here is the full section:

"Section 70 Disclosure for law enforcement purposes, etc.

(1)  The System Operator is authorised to use or disclose health information included in a consumer’s PCEHR if the System Operator reasonably believes that the use or disclosure is reasonably necessary for one or more of the following things done by, or on behalf of, an enforcement body:
(a)  the prevention, detection, investigation, prosecution or punishment of criminal offences, breaches of a law imposing a penalty or sanction or breaches of a prescribed law;
(b)  the enforcement of laws relating to the confiscation of the proceeds of crime;
(c)  the protection of the public revenue;
(d)  the prevention, detection, investigation or remedying of seriously improper conduct or prescribed conduct;
(e)  the preparation for, or conduct of, proceedings before any court or tribunal, or implementation of the orders of a court or tribunal.

(2)  So far as subsection (1) relates to paragraph (1)(e), it is subject to section 69.

(3)  The System Operator is authorised to use or disclose health information included in a consumer’s PCEHR if the System Operator:
(a)  has reason to suspect that unlawful activity that relates to the System Operator’s functions has been, is being or may be engaged in; and
(b)  reasonably believes that use or disclosure of the information is necessary for the purposes of an investigation of the matter or in reporting concerns to relevant persons or authorities.

(4)  If the System Operator uses or discloses personal information under this section, it must make a written note of the use or disclosure.

(5)  This section does not authorise the System Operator to use or disclose consumer only notes."

Observations:

All the System Operator is required to do is keep a note of the fact that it has passed on this data. It doesn’t have to tell anyone, it doesn’t have to ask permission and you almost certainly will never find out if and when your own data has been used against you.

The legislation also allows health professionals to download data into their own systems, whereupon what happened to it is up to the health professional, not the patient. One of the purposes that this data can be put to is in Section 68 of the legislation which allows health professionals to give detailed health data to insurance companies for “indemnity” purposes. If this happens, they are not required to ask you first or even keep a record of it having been done.

Why might this happen? Insurance companies price their offerings on the basis of risk. To manage that risk, they need data, so an insurance contract between an insurer and a health service provider may stipulate that the provider has to provide all records of all patients, or all records of all patients where the provider had notified the insurer of an "incident". It is common for an insurer to require that absolutely everything be reported at the time of incident, even if a claim never occurs.

Even if the insurer does not require it, they may give a discount on insurance premiums to healthcare providers who do provide this patient health information, due to this being evidence of good risk management.

And if it’s legal, it most probably will be done.

The claim that the patient has ultimate control rings hollow. In none of the above possibilities can the patient prevent this happening and they are unlikely to be told that it has happened.

Access Flags

This is what the government says about Access flags. It's in the service provider section of the myhealthrecord.gov.au  website:

Access flags are a key component of the My Health Record System's access control mechanisms, supporting the individual’s capability to restrict the healthcare organisations that are able to access their My Health Record. The level of detail for this capability is established when a healthcare organisation sets access flags. Access flags are set by healthcare organisations in the My Health Record system (not in local systems).

When a healthcare organisation is involved in the care of an individual (and, as a result, is added to the access list for the individual’s My Health Record), access flags determine if any other associated healthcare organisations are also added to the access list for the individual’s My Health Record. Access flags do not prevent the sharing of information that has been downloaded from an individual’s My Health Record. Downloaded information is subject to existing laws and professional obligations.

In the case of a GP practice, an access flag, for example, may be associated with that particular practice. This enables the individuals who have chosen to restrict access to their My Health Record to allow access to that practice, thereby enabling access by authorised users within that practice.

The Healthcare Identifiers Service provides a regime for establishing a network of associated healthcare organisations, consisting of a seed organisation (which is the head organisation of the network) and network organisations (which are subordinate to the seed organisation).

It is the responsibility of the seed organisation to ensure that the network hierarchy supports the setting of access flags in accordance with the principles set out in the My Health Record Rules. In general, these principles require that the setting of access flags balance reasonable individual expectations about the sharing of information as part of providing healthcare and arrangements within the organisation for access to health information collected by the organisation.

The seed organisation must regularly review the access flags of their network hierarchy and adjust them as necessary to remain consistent with the principles. If the System Operator considers that access flags have not been set in accordance with the principles or are otherwise inappropriate, the System Operator will consult with the seed organisation and may require the organisation to change its access flags.

Reference:
What are access flags and how can an organisation use them?
https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/pro-privacy-security#i3

The information about seed organisations and how access control works across a "network hierarchy" does not appear to have been presented to patients or consumers.

What is does seem to be saying is that it's up to a seed organisation to comply with the wishes of the patient based upon principles, rather than the legislation and rules that apply to the My Health Record do not cover a network hierarchy.

Answer to "What control over access do you really have?"

In spite of what the government claims, you have little control over your health record. The control you have is at the organisation level, you can't control which individuals can see your record. There are also many other ways that your health data can be used without your knowledge or permission.

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A bit of history of the health record

Much of the history of what became the PCEHR is in the National E-Health Strategy, 30th September, 2008.

This is from section 4. National Vision for eHealth

"Australia should aspire to continue to lead the world in health outcomes for its citizens. Central to the achievement of this will be a health system which protects and effectively responds to the health care needs of individuals and communities. Developing world class E-Health capability will provide new options for how people manage their own health and interact with the health system regardless of geographic and health sector boundaries.

E-Health will enable a safer, higher quality, more equitable and sustainable health system for all Australians by transforming the way information is used to plan, manage and deliver health care services.

E-Health will:

•    Ensure the right consumer health information is electronically made available to the right person at the right place and time to enable informed care and treatment decisions

•    Enable the Australian health sector to more effectively operate as an inter-connected system overcoming the current fragmentation and duplication of service delivery

•    Provide consumers with electronic access to the information needed to better manage and control their personal health outcomes
Enable multi-disciplinary teams to electronically communicate and exchange information and provide better coordinated health care across the continuum of care

•    Provide consumers with confidence that their personal health information is managed in a secure, confidential and tightly controlled manner

•    Enable electronic access to appropriate health care services for consumers within remote, rural and disadvantaged communities

•    Facilitate continuous improvement of the health system through more effective reporting and sharing of health outcome information

•    Improve the quality, safety and efficiency of clinical practices by giving care providers better access to consumer health information, clinical evidence and clinical decision support tools

•    Support more informed policy, investment and research decisions through access to timely, accurate and comprehensive reporting on Australian health care system activities and outcomes."

Section 6 was the E Health Implementation Roadmap

"The national E-Health Strategy identifies specific targets for the advancement of E-Health adoption across consumers, care providers, health care managers and vendors over the next 10 years. Achieving these targets will mean that Australia will have realised substantial improvements in the way health information is used to deliver safer, more effective and more efficient health care.

As the national E-Health work program progresses, the following describes the indicative outcomes that will be experienced by key stakeholder groups at the three, six and ten year time horizons.

6.3.1 Connect and Communicate (1-3 years)

In three years time, we will be able to measure the progress of the national E-Health Strategy for each of the key stakeholder groups as follows.

Consumers
•    Consumers will begin to be able to be uniquely identified by the health sector through the rollout and initial adoption of the Unique Health Identifiers.

•    Broadband connectivity is available to a vast majority of Australian consumers

•    The national Consumer Health Portal has been implemented and consumers are beginning to use this as one of their primary online sources of health information to assist in management of their health care

•    Consumers are seeing early releases of new E-Health solutions that allow them to begin interacting with care providers through online channels. Prescriptions are being transferred electronically for 10% of the population and 30% of pathology tests are being ordered electronically

•    20% of consumers of access to a limited form of electronic health record and 2-5% of consumers begin to access personal health information from initially available IEHR solutions."

There were other sections that covered Care Providers, Health Care Managers & Vendors, with similar highly optimistic outcomes predicted.

Observations:

That was in 2008 and they were predicting the period up to 2011.

This is 2017. The PCEHR went live in July 2012 and I don't think even the government would argue that very much of the vision has been achieved.

Neither has the progress expected in the last three bullet points been achieved.

There were lots of other predictions and expected outcomes over longer time frames.

Of course the big questions are: Why were they so wrong and have they now got it right? Read the document for yourself and decide if you believe the current predictions and expected outcomes.

A summary is available on the Department of Health website.

The full version is archived here.

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Does the My Health Record utilise best practice regarding the collection of Patient Data?

A recent paper "The Future of Patient Engagement in the Governance of Shared Data" says the following:

Strategies for Eliciting Patient Preferences on Data Sharing

Though implementing a data-sharing mechanism requires efforts not commonly included in current processes, implementing an approach that meets the data-sharing preferences of each patient with regard to privacy, security, and transparency need not be onerous, financially ruinous, or technically overtaxing.

When a patient provides the personal demographic and historical information necessary to set up the electronic medical record initially, the patient can be asked a series of additional questions related to his or her understanding of how what data are collected and how they can be used, such as for retrospective analysis for quality improvement, for medication adverse effect identification and reporting, for identification of eligible clinical trial registrants, and others.

For instance, patients can be asked if they wish to evaluate opportunities to participate in research involving only records review, research involving some additional data collection (e.g., blood tests beyond those they normally undergo), or other research that may help their care partners to better understand their health and, potentially, identify therapies or care that may help maintain their health.

Explanation of data de-identification methods can help alleviate patient concerns about data sharing. Patient education materials developed for this effort should encompass the principles used in creating other patient-directed materials, e.g., text that is readable by individuals with moderate levels of health literacy, accurate illustrations, use of multimedia to illustrate complex concepts, etc.

At the initial encounter, patients can also be offered the option of making decisions about use of their data at a future clinical encounter, after they have had time to think about their preferences and, if appropriate, develop a list of questions to ask their provider. This opportunity for reflection and consultation with family, friends, and trusted associates (e.g., culture brokers) is critical for two reasons.

First, it provides patients with education and an opportunity to think through the many issues related to decisions about the use of their personal data.

Second, it demonstrates the shared nature of the decision-making that will occur between patients and the members of their care teams. In this way clinicians, researchers, and patients can move forward together in a true spirit of “nothing about me without me.”

This clear and present effort to partner with patients rather than act unilaterally on their behalf strengthens the dynamic of patient engagement that will underlie provider-patient relationship in years to come. 

Reference:
The Future of Patient Engagement in the Governance of Shared Data

Observations:

The most important part of the strategy is contained in the last sentence - partner with patients rather than act unilaterally. The original opt-in design of the PCEHR, now My Health Record, did not follow this advice.Making the My Health Record opt-out makees the situation even worse.

Answer to the question "Does the My Health Record utilise best practice regarding the collection of Patient Data?"

No.

It never did and, as an opt-out system, never can.

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What should a good Health Record look like?

Here are some important dimensions of patient record quality include the following (based upon American Health Information Management Association, 2012):

"Accuracy – The extent to which data report the state of affairs truthfully and are free of identifiable errors.

Accessibility – Easily found data items, with robust mechanisms in place to limit access to only those individuals who are legally entitled to see the record.

Comprehensiveness – Inclusion of all required data items.

Consistency – Recording of data in the same way and with the same meaning across records.

Currency – The degree to which data are up-to-date.

Definition – The clarity of understood meaning of any given data type (e.g. contrast the ambiguity of the data item labels ‘systolic blood pressure’ with ‘pressure’).

Relevance – The extent to which data are useful for the purposes for which they were collected and do not provide unneeded information."

(Guide to Health Informatics - Third Edition, Enrico Coiera, 2015)

Observations:

We can look at the My Health Record and measure it against these dimensions

Accuracy – The data in the My Health Record is of unknown accuracy. A health carer using the data needs to be aware of the advice given by the government - It is not reliable.

Accessibility – The data in the My Health Record system is in individual documents which (as of writing), cannot be searched. Anyone with access to the record can see all of it, unless specific and individual documents have been hidden. It is also not easy to download the data into other Health Record systems other than as whole documents. This is both cumbersome and makes integration with clinical decision making tools problematic.

Comprehensiveness – The My Health Record is a summary of an individual’s significant health information it is not a complete record. And a health carer cannot assume that, just because there is no record of a condition such as e.g. allergy, adverse reaction, or pregnancy, the patient does not have that condition.

Consistency The data in the My Health Record comes from a variety of sources with no standard format or consistency within or across records.

Currency – The data in the My Health Record will be dated but there is no indication that shows if it is up-to-date. It is possible that a patient's condition could have changed, even in a matter of hours.

Definition – This has the same problems as that of Consistency.

Relevance – The purpose of the My Health Record covers a variety of goals, for which there could be a significant amount of data, much of which has doubtful value and which can cause confusion and wasted time for a health professional.

And there's a recent report published in the Annals of Internal Medicine. Here are some selected quotes:

"Policy Recommendations for Clinical Documentation

The primary purpose of clinical documentation should be to support patient care and improve clinical outcomes through enhanced communication.

The clinical record should include the patient's story in as much detail as is required to retell the story.

The EHR should facilitate thoughtful review of previously documented clinical information. Ready review of prior relevant information, such as longitudinal history and care plans as well as prior physical examination findings, may be valuable in improving the completeness of documentation as well as establishing context.

Where previously documented clinical information is still accurate and adds to the value of current documentation, this process of “review/edit and/or attest, and then copy/forward” (hereafter referred to as copy/forward) of specific prior history or findings may improve the accuracy, completeness, and efficiency of documentation. However, these documentation techniques can also be misused, to the detriment of accuracy, high-quality care, and patient safety.>

Policy Recommendations for EHR System Design to Support 21st-Century Clinical Documentation

1. EHR developers need to optimize EHR systems to facilitate longitudinal care delivery as well as care that involves teams of clinicians and patients that are managed over time.>

2. Clinical documentation in EHR systems must support clinicians' cognitive processes during the documentation process.

3. EHRs must support “write once, reuse many times” and embed tags to identify the original source of information when used subsequent to its first creation."

Observations:

Nothing available on the government's website or in the documentation available on the NEHTA website (the organisation responsible for developing the system) give any indication that any of these matters have been incorporated into the My Health Record system.

The differences couldn't be more stark than these statements:

From the report in the Annals of Internal Medicine:

"The primary purpose of clinical documentation should be to support patient care and improve clinical outcomes through enhanced" communication.

From myhealthrecord.gov.au (see the next section)

"It is important to remember that the My Health Record system is not intended to be a communication tool"

Answer to "what should a good health record look like?"

The My Health Record does not meet the requirements for a good Health Record. The data is unmanaged, is it unreliable, it is does not meet clear objectives and it does not replace existing and useful health record systems.

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Is My Health Record really for use by Healthcare Professionals when you consult them?

The government's web site says this:

What will happen to already existing medical records?

“My Health Record will not replace existing medical records. It is an additional tool that brings together a summary of an individual’s significant health information that is important to their ongoing care.

Healthcare providers will continue to take and review clinical notes. It is important to remember that the My Health Record system is not intended to be a communication tool – it will not replace the need to communicate important health information directly to individuals or other healthcare providers treating them.”

Reference:
"https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/healthcare-providers-faqs#ia2"

In a report released on 31 March 2016 is this quote:

"In particular, the barriers to accessibility of the My Health Record by allied providers and specialists must also be addressed and, some additional capabilities must be developed.  This could include the production of ‘at a glance’ summaries of useful health information on My Health Record and enhanced capacity for patients to provide feedback on their record or care plan to facilitate collaboration across the team."

Reference:
Primary Healthcare Advisory Group Report:
Better Outcomes for people with Chronic and Complex Health Conditions

Answer to "Is My Health Record really for use by Health Care Professionals when you consult them?"

The government's website gives one answer to this question - No.

The Primary Health Care Advisory Group Report suggests that there are barriers to accessibility that need to be addressed. Which is pretty much another no.

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Are doctors happy with the My Health Record System?

In general it would appear that they see no compelling reason to use My Health Record.

Government statistics show the number of registrations of consumers and providers. They also show the number of uploads.

None of these represent meaningful use.

For a health record to be of use, it needs to have been downloaded and the data in it used in a clinical setting to help with healthcare.

There are no reported figures that tell us how many times this may have happened. $1.5b and growing is a lot of money to spend on a system that never seems to have been used for the purpose it was implemented.

We have created another page that contains information that indicates how happy the medical profession is with My Health Record. Once again, read the information and make up your own mind.

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Are lawyers happy with the My Health Record System?

This is what Danuta Mendelson, Chair in Law (Research), and Gabrielle Wolf, Lecturer, both at Deakin Law School, Faculty of Business and Law, Deakin University say about the My Health System in a long and comprehensive analysis of the system:

Abstract

We examine the operation of Australia’s national electronic health records system, known as the “My Health Record system”. Pursuant to the My Health Records Act 2012 (Cth), every 38 seconds new information about Australians is uploaded onto the My Health Record system servers. This information includes diagnostic tests, general practitioners’ clinical notes, referrals to specialists and letters from specialists.

Our examination demonstrates that the intentions of successive Australian Governments in enabling the collection of clinical data through the national electronic health records system, go well beyond statutorily articulated reasons (overcoming “the fragmentation of health information”; improving “the availability and quality of health information”; reducing “the occurrence of adverse medical events and the duplication of treatment”; and improving “the coordination and quality of healthcare provided to healthcare recipients by different healthcare providers”).

Not only has the system failed to fulfil its statutory objectives, but it permits the wide dissemination of information that historically has been confined to the therapeutic relationship between patient and health practitioner.

After considering several other purposes for which the system is apparently designed, and who stands to benefit from it, we conclude that the government risks losing the trust of Australians in its electronic health care policies unless it reveals all of its objectives and obtains patients’ consent to the use and disclosure of their information.

Conclusion

The My Health Record system and the legislation that establishes and supports it have fundamentally changed understandings of the functions of clinical records.

No longer created and used simply to provide health care to patients, health practitioners’ records of their treatment of patients have become property for use by government and commercial entities for a variety of purposes well beyond serving patients’ therapeutic needs. Patients’ lack of control over their electronic records and derivation of minimal, if any, benefit from the My Health Record system will ultimately engender distrust in the system.

To have any hope of restoring the community’s faith in electronic health records, the Australian Government will need to ensure that the My Health Record system genuinely serves patients’ interests, be completely transparent about all of the objectives of the system, and obtain patients’ agreement to the collection, use and disclosure of their health information for purposes that  may not benefit them personally.

In other words, the government operating the My Health Record system needs to be mindful of Immanuel Kant’s second categorical imperative to “act in such a way that you treat humanity, whether in your own person or in the person of any other, never merely as a means to an end, but always at the same time as an end”.

Reference
“My [Electronic] Health Record” – Cui Bono (For Whose Benefit)?
By Danuta Mendelson  and Gabrielle Wolf
(2016) 24 Journal of Law and Medicine

Observations:

This paper should be read and understood by everyone interested in what the Australian Government has done to, and with, Australian's health data.

From our reading of this paper we strongly suggest the answer to the question "Are Lawyers Happy with the My Health Record System?" is No.

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How can I be sure information in the My Health Record System is up to date?

The government's web site says this:

“Clinical information you find within your patient’s My Health Record should be interpreted in much the same way as other sources of health information. It is safest to assume the information in a patient’s My Health Record is not a complete record of a patient’s clinical history, so information should be verified from other sources and ideally, with the patient.”

Reference:
"https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/healthcare-providers-faqs#ia8"

Observations:

So, it's not a primary clinical health record, it can't be assumed to be up-to-date and it's not a communication tool.

And if you look at NSW's Electronic Medical Record you can see how different it is and how it is aimed directly at healthcare and health practitioners.

Answer to "How can I be sure information in the My Health Record System is up to date?"

It does not increase the access to health information at the point of care.

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How Secure is Your Health Data?

The Government claims it is secure.

"The Turnbull Government takes privacy very seriously and we have put in place the necessary protections to ensure the information in your My Health Record is as safe and secure as possible."

Observations:

Best practice security demands that information should be compartmentalised and only accessed on a need-to-know basis. The My Record System does exactly the opposite; all the information is available to anyone with access to the record. This might be justified on a healthcare basis, although even that is disputed, but it is a major security weakness with no attempt at any sort of risk mitigation.

The government has built a system that makes access to your health information much easier. Unfortunately, at the same time they have also made unauthorised and unintended access so much easier as well.

Answer to "How Secure is Your Health Data?"

It isn't secure. The IT might be secure, but the information isn't - by design.

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Who owns your health data?

On the government's website it says this, regarding copyright:

"How is intellectual property and copyright managed for my Health Record?

As a general rule, the author of material will be the owner of any copyright in the material unless the author created the materials as an employee in the normal course of their duties (in which case the employer will own the copyright).

Agreements between Healthcare Provider Organisations and their employees (including contractors) may state who will own the copyright in materials created by the employee. Healthcare Provider Organisations may wish to develop arrangements to deal with the intellectual property rights of other providers or organisations. Healthcare Provider Organisations must not upload information to the My Health Record system if it would breach copyright, such as if the organisation does not own the intellectual property in a document and does not have permission from the author to upload the document."

Reference:
Health Care provider FAQ

Observations:

So, as a general rule, the author of the material will be your GP, your specialist or the hospital where you received treatment. Old material may be owned by people you never see again because you have moved or because you wanted to see a different healthcare specialist.

Who owns your Shared Health Summary?

The government says:

A Shared Health Summary is a clinical document summarising an individual’s health status and includes important information such as allergies/adverse reactions, medicines, medical history and immunisations. Only a Nominated Healthcare Provider can create or update the Shared Health Summary.5

Reference:
My Health Record Glosssary

Observations:

See the section on correcting data in your health record to see how easy it is to get your data changed.

Obviously, you don't own your own Shared Health Summary. If there is something you want in it, or something you don't want said, or re-phrased you have to go to your Nominated Healthcare Provider and ask nicely. If there is a disagreement, then you have to contact the System Operator and try and get them to help. Not that they can do a lot, other than request the Nominated Healthcare Provider to make changes, but not what to say.

Answer to "Who owns your health data?"

Not you. If you did you would be able to change, add or delete anything you wanted to. Not that this would be a good thing, but it does indicate that "my Health Record" means that it is about you, not that you own it or even have full control over it.

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Can you correct the data in your health record?

On the government's website is this advice to consumers

"Some situations may arise in the My Health Record system that could result in incorrect information appearing in the record, key health information be missing or information displaying in a confusing way.

If you believe that information in your digital health record contains an error or is missing key information, contact the relevant healthcare provider to have the information reviewed and corrected.

If the healthcare provider who uploaded the information is unable to assist, you (or your Authorised Representative) can remove the document yourselves. For assistance on how to remove a clinical document from your digital health record, or to report a display issues, contact the My Health Record Help line on 1800 723 471."

Reference:
What do I do if I notice an error in my Health Record?
[Accessed 23 May 2016]

And on this page of the government's website is this advice to health care providers:

"What if there is an error in the information located in my My Health Record?

If you become aware that information in a clinical document you have uploaded contains an error or is incorrect, you should upload a new, correct version of the document.

If you identify an error or issue in a patient My Health Record system that may have clinical implications, corrective steps should be taken. This includes contacting the patient or the relevant healthcare provider to have the information removed or amended.

If a replacement document is uploaded, the previous version will still be accessible as an historical version; however the new uploaded document will take precedence.

If you identify an unexplained error in a clinical document that you have uploaded to a patients My Health Record, or have encountered a technical problem or service disruption while using the My Health Record system which may affect the care provided to your patient, you should call your software vendor to determine whether the error can be resolved locally.

If the issue cannot be resolved, contact the My Health Record helpline on 1800 723 471 and select Option 2 (for providers) to report a clinical safety issue to the System Operator."

Reference:
What if there is an error in the information located in my My Health Record
[Accessed 23 May 2016]
Comment. This is a strange heading as it isn't the healthcarer's record, it's the patient's. Also, the errors in spelling and grammar were ass of the accessed date.

Observations:

Only the person who created that data can correct it. You can't, you can only go to the person who generated it and ask for it to be corrected. If you have moved to another location that may be difficult. If you disagree with whoever wrote it and they refuse to change it, the only thing you can do is remove the document from your health record. This may be counter productive because there could be useful information in the document.

On its website, the government does say

"If a healthcare provider refuses to correct the information you may complain to us, or the Office of the Australian Information Commissioner

We have the power to request a healthcare provider organisation correct personal information contained in a My Health Record and to upload the corrected document to the My Health Record system."

Reference:
Privacy Policy
In the section on "I am getting a My Health Record or I am a representative."

Observations:

This is an interesting twist. They don't seem to be able to request a healthcare provider correct person information in the My Health Record, only a healthcare provider organisation. And request is not the same as insist.

Answer to "Can you correct the data in your health record?"

Only the data you have put in. You can ask your GP to correct the data they have entered, if they agree with you. If you can't find the author, you can't correct or change the data. If you are having trouble correcting your health data, all you can do is call the helpline and "report the issue". Maybe the System Operator will make a request for you.

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How do you resolve a dispute or disagreement between authors of material in your health record?

There is nothing on the My Health Record website about disputes between authors of material in your health record.

Observations:

The only option appears to be to call the helpline and report the issue. There is no evidence anywhere of a dispute resolution procedure or a mediator who can facilitate the correction of your health data. Health data, apart from being highly personal, can also be dangerous if incorrect, confusing or out of date.

Answer to "How do you resolve a dispute or disagreement between authors of material in your health record."

You can't, all you can do is report it. What happens then, nobody knows.

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Is the government going to sell your health data?

The Government has released a Request for Expressions of Interest (REI) for so-called “secondary usage” of health data.

It seems the government wants to take the data in the My Health Record, de-identify it (remove personal identifying data) and make it available to various organisations.

In general, the Federal government is looking at ways of making your personal data more accessible.

The Productivity Commission is conducting an inquiry into Data Availability and Use. They say:

"This 12-month public inquiry will investigate ways to improve the availability and use of public and private sector data."

Observations:

Media reports such as these Your private health data could be sold for profit and Anonymous GP data can be cracked: warning suggest that this is neither safe nor an easy thing to do.

It is relatively easy to take de-identified data and match it with data you already hold on people (the sort that government agencies, insurance companies have) and, with a high degree of accuracy, re-associate the data with the original person.

In this year's (2016-17) budget, the Department of Health explained that is going to start charging for what it's been giving away for free.

"Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data – efficiencies
This measure will enable the Department of Health to, for the first time, charge for supplying external clients with customised Medicare Benefits Schedule, Pharmaceutical Benefits Scheme and other health data.

It will also look at the potential to extend similar cost recovery arrangements to other Department of Health work.

Why is this important?
External requests for health data completed by the department are currently supplied to the client at no charge.

Implementing this measure will mean that all non-government requests for health information, (unless for a project funded directly or indirectly by the Commonwealth), statistics or data, where publicly available data is insufficient to meet client needs, will be done through a single aligned process and costing structure.

This proposal is consistent with the Australian Government Charging Framework. It is also consistent with the Government’s emphasis on open data.

Who will benefit?
Clients will now be invoiced for the true cost of work done by the department.

Research organisations or external parties who are contracted or funded by the department or the Commonwealth to undertake particular projects which may need data to fulfil their project or grant obligations are not affected.

How much will this cost?
This measure is ongoing and will save $0.2 million from 2016–17 to 2019–20, commencing 1 July 2016."

Reference:
Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data – efficiencies

Answer to "Is the government going to sell your health data?"

They are already.

We don't know how much more they will be selling, because they haven't decided, or if they have, they haven't told us. If they do, is it safe? Any data that is de-identified runs the risk of being re-identified. The more data that is out there, the easier this will become and the greater the risk to privacy.


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Does the government have plans for other uses for your health data?

As well as investigating how they may sell your health data the government has announced its Healthier Medicare package which will, in part comprise:

"Improved use of digital health measures to improve patient access and efficiency, including the new MyHealth Record, telehealth and teleweb services, remote health monitoring and medication management technologies etc.

A risk stratification tool to determine an individual patient’s eligibility for the new packages.

Stronger data collection, measurement and evaluation tools to allow a patient’s individual progress to be measured and their care plan to be better tailored to their needs.

The creation of a National Minimum Data Set of de-identified information to help measure and benchmark primary health care performance at a local, regional and national level to inform policy and help identify regionally-specific issues and areas for improvement."

Reference:
Prime Minister's Press release 31 March 2016

In a media release dated 18 December 2015 the Australian Bureau of Statistics says:

"The combination of Census data and health data can help improve Australia’s understanding and support of people who require mental health services and assist with the design of better programs of support and prevention."

Reference:
Retention of names and addresses collected in the 2016 Census of Population and Housing

Observations:

These are notable for their lack of detail - how is the data to be created? how will it be input? who will be responsible for its accuracy? who will have access to it? what does "care plan tailored to their needs" mean? how are the risks of re-identifiication to be managed?

It may well be yet another simplistic idea that sounds good but which has not been very well thought through.

Answer to "Does the government have plans for other uses for your health data?"

Yes, but we don't know the full extent, therefore we can't assess the risk to your privacy.

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Are there alternatives to My Health Record?

Consumers and patients

Many people believe My Health Record has limited or no clinical reliability; consumers and health professionals are likely to find the limited and unreliable data it contains does not necessarily meet any need they have, especially if traded off against the potential for improper but unrevealed misuse.

Unless you know you have a particular needed for a My Health Record, you are probably better off without one. In our opinion, the lack of benefits do not justify the risks to your privacy.

An alternative approach you might consider is this one which was posted by an anonymous contributor to Dr David More's blog. You can find it in the comments section towards the bottom.

"My Doctor gives me an updated health record every time I see him.

He asks for my health record USB, plugs it in to his system, drops my summarized personal health record on to the USB, secures it with a random security code which he writes down and gives to me. I can access the record when I want and download it onto my computer if I want. I can let my specialist upload it from my USB or read it on my laptop when I see him. I can also take it with me to hospital.

On one occasion I printed it out showing the date it was last updated and the hospital inserted it into their hospital record. Next time I see my GP he will repeat the process, overwriting what's on the USB and provide me with my own updated personal health record.

It's very convenient. I think it's probably the way of the future.

April 06, 2016 1:53 PM"

If you are not part of the trials the you won't have a My Health Record unless you opt-in.

If you are part of the trials, then you can opt-out, provided you do it before mid-june. The government explains the process here. Our campaign page explains some other alternatives to opting-out

Government

The UK government's Summary Care Record

What is the Summary Care Record?

The NHS in England is using an electronic record called the Summary Care Record to support patient care. All the settings where you receive healthcare keep their own medical records about you.

These places can often only share information from your records by letter, fax or phone. At times, this can delay information sharing and this can affect decision making and slow down treatment.

About your Summary Care Record

Your Summary Care Record contains important information about any medicines you are taking, any allergies you suffer from and any bad reactions to medicines that you have previously experienced.

Allowing authorised healthcare professionals to have access to this information will improve decision making by doctors and other healthcare professionals and has prevented mistakes being made when patients are being cared for in different care settings.

Your Summary Care Record also includes your name, address, date of birth and your unique NHS Number to help identify you correctly.

You may want to add other details about your care to your Summary Care Record. This will only happen if both you and your GP agree to do this. You should discuss your wishes with your GP practice.

Healthcare staff will have access to this information, so that they can provide safer care, whenever or wherever you need it, anywhere in England.

Who can see my Summary Care Record?

Healthcare staff who have access to your Summary Care Record:
Healthcare staff will ask for your permission every time they need to look at your Summary Care Record. If they cannot ask you (for example if you are unconscious or otherwise unable to communicate), healthcare staff may look at your record without asking you, because they consider that this is in your best interest.

If they have to do this, this decision will be recorded and checked to ensure that the access was appropriate.

What are my choices?

Observations:
The major differences between the UK's Summary Care Record (SCR) and My Health Record are:

  1. The SCR takes advantage of the fact that patients are enrolled in practices, have a NHS number (an Individual Health Identifier in the Australian system) and virtually all GP practices are automated.

  2. The SCR is not patient controlled

  3. It is possible to opt out, although pretty much no one does.

  4. The SCR is automatically created and uploaded whenever the doctor updates the patient record - and the summary replaces the earlier one thus minimising GP time for the basic functions

  5. There is no attempt to display historical data (unless specifically added), just the current data that might actually be useful.

  6. The record holds the minimum amount of data to facilitate emergency care, which is the intent of the record  and which is where the record is accessed - A&E Departments.

  7. GP practices are the information and history holders and the centralised system is just used to provide access to the data to help in acute presentations.

  8. Access to the SCR is on a need to know basis

  9. The people who access the SCR need a smartcard and are identified individually, unlike My Health Record which only knows the institution of the service provider.

Reference:
NHS Digital. Summary Care Records

Advanced Care Plans

Having an advanced care plan prepared and available in times of emergency or end of life is a good idea. Implementing a useful and reliable solution is harder

The UK has developed a system called Coordinate My Care which

"has been developed to give people an opportunity to create a personalised urgent care plan where they can express their wishes and preferences for how and where they are treated and cared for.

We are an NHS clinical service and work to empower patients to have choices about the care they receive and to make those choices known to those who care for them. We look to continually link up the organisations and individuals that provide care for a patient including doctors, nurses, social care providers and emergency services including the ambulance service, NHS 111 and the out of hours GP service. 

We work with GPs to support the needs and wishes of patients. GPs work together with their patients to create a personalised urgent care plan that is prepared and recorded on CMC to ensure all care providers can access this information all day, every day."

Observations:

Coordinate My Care has been developed and is supported by a team which included a number of experienced health care specialists.

It is highly focused, is optional and the information in the system is reliable and carefully managed in order to achieve a specific purpose.

We have no idea how many people use the system or how it has been received by the general population. However the approach contrasts starkly with that of the My Health Record which has a simplistic goal of aggregating as much health data as possible, not managing it for clinical purposes and then telling health practitioners that it cannot be relied upon.

The Australian government has announced the inclusion of an Advanced Care Planning document in My Health Record. It would appear to be just another document amongst all the others. Compare it with the approach of Coordinate My Care who have taken an outcome based approach, rather than the document storage approach of My Health Record. This is from the Coordinate My Care website:

All the organisations involved have signed formal agreements that govern how care plan information is used and protected, and they undertake to provide CMC with updated lists of staff that are trained and authorised to access the system.

At the heart of CMC is an urgent care plan that is developed with a patient by their nurse or doctor. The care plan contains information about the patient and their diagnosis, key contact details of their regular carers and clinicians, and their wishes and preferences across a range of possible circumstances.

This care plan is uploaded to the CMC system to which only trained legitimate professionals have access. These include ambulance control staff, NHS 111 operators, GPs, out of hours GP services, hospitals, nursing and care homes, hospices and community nursing teams.

Reference:
http://coordinatemycare.co.uk/healthcare-professionals/

Answer to "Are there alternatives to the My Health Record?"

Yes there are systems out there that are far simpler, cheaper and more useful than My Health Record that do not represent the same level of risks to patients and their health data.

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Claims about the Trials

The Government claims that, as part of the registration trials, you will be given a health record:

"The number of Australians with a digital health record will jump by more than a million – or 40 per cent – as part of the Turnbull Government’s commitment to improving health outcomes and saving lives through digital innovation and information sharing.

Observations:

This is not true.

All that will happen is that you will be registered so that you can get a health record. You will still need to see your GP, appoint a Nominated Healthcare Provider and then ask the GP to put something in the record. Otherwise it will just be a list of your Medicare and prescription claims. These do not constitute a health record.

The government makes much noise about the number of registrations. What it doesn't talk so much about are the number of health records with meaningful and/or useful content, the number of GPs who use the system and the number of other organisations such as pathology labs and hospitals who participate in the system. These measures would give a much clearer indication of the use of the system as opposed to the number of Australian's who, for one reason or another have either signed up or been coerced into being given one.

The government is only telling you about the supposed benefits of the system. There are many downsides to the system not the least being that it's not much of a health record, when you should consider not having one, who can really access and see your health data and the poor security of the system.

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Public Awareness Campaign for the trial

In a Privacy Impact Assessment Report of 20 May 2015, available on the My Health Record website, as part of the "Implementation of Opt-Out Model", under the Government Announcement phase it says:

"A public awareness campaign will be implemented, directed at the public at large as well as special interest groups."

The Aboriginal Medical Services Alliance Northern Territory website on the health record has this:

"The opt-out trials will be supported by national activities aimed at increasing awareness of the My Health Record amongst individuals and healthcare providers. This will be complemented by localised information campaigns and the availability of face-to-face training as required by healthcare providers in the trial sites"

On a webpage that used to be on myhealthrecord.gov.au but which has mysteriously disappeared, the government said

"On 28 October 2015, the Minister for Health announced the opt-out trial locations. These are the regions covered by the Northern Queensland and Nepean Blue Mountains (NSW) Primary Health Networks. The two areas have a combined population of over one million people. Under an opt-out participation model, individuals living in these regions will have a My Health Record automatically created for them unless they choose not to have one (that is, they decide to ‘opt out’). The opt-out trials will be supported by national activities aimed at increasing awareness of the My Health Record amongst individuals and healthcare providers. This will be complemented by localised information campaigns and the availability of face-to-face training as required by healthcare providers in the trial sites"

Fortunately there is a copy in in the internet archive.

The webpage used to be https://myhealthrecord.gov.au/internet/ehealth/publishing.nsf/Content/trials, but if you click on that you get different page with the following information:

"The Australian Government is giving everyone in Nepean Blue Mountains in New South Wales and Northern Queensland a digital health record, called a My Health Record. Over one million people will get a digital health record automatically created for them by mid-June 2016. The My Health Record participation trial locations were announced by the Federal Health Minister in October last year. Primary Health Networks will be working closely with residents and local healthcare provider organisations in these communities in getting ready for My Health Record. The trials conducted in these locations will be evaluated. If this automatic registration to My Health Record in the trial locations leads to higher participation in the My Health Record system, the Government may consider doing it on a national scale in the future

A number of trials of innovative approaches to increasing participation in and use of the My Health Record utilising the current registration arrangements will also be undertaken in 2016.

The outcomes of the trials will inform decisions expected in 2017 about future strategies for bringing forward the benefits of the My Health Record system nationally."

Observations:

Notice how things have subtly changed.

A "public awareness campaign" has been transformed into "working closely with residents and local healthcare provider organisations"

Notice how the trials will be measured: "leads to higher participation", not "is used by clinicians".

So far the only evidence of a public awareness campaign aimed at consumers is the media release from the Health Minister, Sussan Ley. This is not much of a campaign.

If the government did run such a campaign aimed at the public, it would be a good idea to include information such as:

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What does Parliamentary Joint Committee on Human Rights Think of the Trials?

The Parliamentary Joint Committee on Human Rights had this to say in a report last year, commenting on the eHealth bill 2015, page 72

2.85 The question raised by the committee was what is the reasoning or evidence that establishes that the objective behind the opt-out model is a legitimate objective; in that it seeks to address a pressing or substantial concern. In relation to this, the committee notes the minister's response that under the current rates of participation for My Health Records, healthcare providers generally lack any incentive to adopt and contribute to the system, thereby limiting the usefulness of the system. The minister also notes that currently roughly two-thirds of healthcare providers use paper based records and increased registration with, and use of, the My Health Record system would encourage the use of healthcare providers to use electronic records for their patients in the My Health Record system. The minister also states that increased use of the My Health Record system will deliver cost benefits to the healthcare system, which will occur more quickly under an opt-out model than the current opt-in model.

2.86 Reducing costs to the healthcare system is likely to be a legitimate objective for the purposes of international human rights law. However, the committee notes that the minister's response does not provide any evidence to demonstrate that increasing numbers of persons registered on the My Health Record system would in fact reduce healthcare costs.

2.87 However, even assuming that the opt-out model would result in increased use of the My Health Record system by healthcare professionals, and thus reduce healthcare costs, the committee remains concerned that the means to achieve this increased usage may not be proportionate to the objective sought to be achieved. In particular, no information is provided by the minister as to why the current opt-in model has not succeeded, and whether there are other methods available to ensure more people voluntarily decide to include their health records on the My Health Record system. This is relevant to the question of whether there are other less rights restrictive ways to achieve the same aim.

2.88 The minister's response states that people in the initial trial locations will be notified by letter that their personal health information will be automatically uploaded on the national register. However, no detail is provided as to whether this will provide sufficient detail to people to allow them to be fully aware of their rights to opt-out of the system. The committee reiterates that the bill itself does not set out any safeguards to ensure that healthcare recipients are given reasonable notice or a reasonable amount of time to decide whether to opt-out.

2.89 The committee also notes the minister's statement that the move to automatically upload everyone's personal health records onto the national database is 'likely to improve privacy' for individuals, as it will decrease reliance on paper records. However, it is not apparent that including all personal health data on a centralised national database would better protect privacy – information on government databases also run the risk of being inappropriately accessed, and including more personal information that can be accessed by more people is not likely to improve the right to privacy for individuals.

Observation:

Our interpretation of this report is that they are not convinced that opt-out is a good idea, that the Minster for Health has not explained herself very well and that there are some significant concerns and weaknesses in the government's stratey. Read the report  for yourself.

Reference:

Parliamentary Joint Committee on Human Rights
Human rights scrutiny report
Thirty-second report of the 44th Parliament
December 2015

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What other people are saying about Digital Health initiatives.

The government is anxious to tell you why it thinks the My Health Record is good for you and your health. It's behaviour has a lot in common with an IT sales approach:- only mention the benefits, never the costs, risks, dangers or downside. Never say what's in it for the government.

We aim to try and redress this imbalance.

This section points to a few sources that have a less rose coloured glasses view of My Health Record and eHealth in general than does the government.

We also have another page with more links to information on digital health initiatives and data hacks

Not all are Australian references but, in general, they discuss the downside of poorly implemented Digital Health initiatives. In some cases the experiences they discuss may not translate directly into the Australian environment - healthcare practices and health funding are different around the world.

The APF does not necessarily endorse or support any of these views; they are provided as an information source so that you can make up your own mind.

Australian

International

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Links to Other Pages

My Health Record information pages on this site

A short, concise summary of My Health Record

Patient Centric Privacy

Campaign Page

Overview of My Health Record

The Value of My Health Record

Information about My Health Record

The My Health Record Call Centre

Information on other sites about Health Records and Data Hacking

What doctors think about My Health Record

Setting the Government Straight

Archive of Twitter Images


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