What doctors think about My Health Record

It can be argued that the primary beneficiaries of a health record are the health care professionals who use the data in the record in order to inform decision making.

It is our observation that some health professionals like the idea of a system such as My Health Record, a system that adds useful functionality to their existing system.

It is also our observation that many healthcare professionals are not convinced of the benefits of My Health Record Systems while others are actively hostile to it.

This page is a collection of pointers to information provided by doctors and associated institutions regarding the usefulness or otherwise of My Health Record as well as eHealth in general. In some cases we have quoted from these sources in order to make our own observations.

All of these pointers and quotes are publicly available.

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


Table of Contents

Detailed information, with observations

RANZCP submission to the Department of Health

Australian College of Health Infomatics

Doctor's views in the Media

RACGP President's View

My health records project remains sick

Links to useful sites

Australian Health Information Technology
Blog of Dr David More
This blog is totally independent 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.

Doctor's Bag (eHealth tag) Blog of Dr Edwin Kruys

Links to other pages



Detailed information, with observations

Royal Australian and New Zealand College of Psychiatrists

In June 2015, the Royal Australian and New Zealand College of Psychiatrists (RANZCP) put in a submission to Department of Health regarding its Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper {the Discussion Paper). This was before the system was renamed the My Health Record.

It said, among other things:

"the RANZCP has concerns regarding how the Personally Controlled Electronic Health Record (PCEHR) system will work in practice - especially around issues of privacy and access to sensitive health information, which are especially relevant to patients with mental illness."

And

While the RANZCP recognises the need to address what has up until now been a lack of meaningful usage of the PCEHR, the move to an opt-out model raises a number of serious questions around privacy, choice and duty of care, which need to be addressed. These issues include:

• For involuntary patients, those who are experiencing an acute episode of mental illness, or those with a significant acquired brain injury, for example, will a PCEHR still be automatically created? What are the implications if these patients are unable to fully understand the information provided to them about the PCEHR or the option of opting out or withholding certain documents?

• Will a carer or guardian also have access to the PCEHR of their dependant? What are the implications for privacy should the dependant wish to withhold some sensitive health information from their carer but not their doctor? For example, a person may wish for their regular general practitioner to have information about their sexual health, but not their carer.

• How will the PCEHR interact with state-based guardianship laws, presuming that everyone has the capacity to make their own decisions, including about their medical care, unless there is evidence to the contrary? The laws also provide that people who require guardianship services, such as people with dementia, who are mentally ill and have acquired brain injuries, are able to make their own decisions in many circumstances if they are given the appropriate care and support. Careful consideration will need to be given to these issues so that people who are, for instance, mentally ill and utilising guardianship services, are given the appropriate level of autonomy and independence to make their own decisions about healthcare and treatment.

Another concern is the kind of information stored in the PCEHR. If particularly sensitive information to do with sexual health, trauma or mental health is recorded in the PCEHR, the patient may feel it necessary to disclose this information to some health practitioners and not to others. For example, if patients have received medical treatment following a sexual assault, they may deem this relevant information for the psychiatrist but they may feel disclosure to their podiatrist is unnecessary and invasive. Will there be levels of access depending on the sensitivity of information and its appropriateness to different parties? Will there also be any provision for hand-written records to be kept in parallel to record sensitive information or detailed records made during the interview with a patient or will clinicians be expected to operate in a paperless system, thus losing much useful detailed history? This detail is not only useful for clinicians assessing patients at a subsequent time but also for the preparation of medico-legal and other reports.

With respect to medico-legal and privacy issues, there are concerns around the potential for information to be inappropriately accessed and used. For example, there is a growing trend for solicitors to issue subpoenas of broad scope to obtain sensitive health information, often to be used in family law proceedings to 'dig up dirt' on estranged spouses. The PCEHR, being a centralised location for much of the patient's health information, leaves patients particularly vulnerable with regards to this matter. RANZCP members have also raised concerns about insurance companies gaining access to health records and misusing this information in ways that are detrimental and unfair to the individual.

Currently, under the PCEHR Act, it is possible for the Systems Operator to be directed to disclose health information included in a consumer's PCEHR. The Discussion Paper proposes that the revised PCEHR system will move to a principles-based approach, which includes the purposes for which information can be collected, used and disclosed. However, the potential breadth of sensitive information contained in a PCEHR, and the potential for the misuse of this resource is an issue that the RANZCP considers requires further work. The RANZCP also wishes to emphasise an important issue in relation to mental health diagnoses under the PCEHR system. Mental health diagnoses are often less clear cut than their physical health equivalents. Diagnoses can change as more information becomes available, research in the field develops or courses of treatment are found to be more or less effective. Therefore, a change in a patient's mental health diagnosis is a common occurrence and - if previous diagnoses are not critically reviewed - it can and does result in many years of unnecessary treatment and stigmatisation of the patients concerned.

Consequently, the RANZCP considers that more information is required as to how the issue of a changing diagnosis will be reflected in a PCEHR. If a diagnosis is made by one practitioner and then reviewed, changed or removed by another, for example, how will this show up? Are there measures in place to avoid stigmatisation of an individual due to an incorrect diagnosis? Any PEHCR system would need to be flexible enough to allow easy correction of mislabelling and adjustments made as the result of new information coming to light or a change in presentation.

Reference
RANZCP submission, on the government's website.

Observations:

Our reading of this submission would suggest that the RANZCP is not comfortable about the the system or its operation. Mental health and sexual health issues are amongst the most sensitive of personal data. To the best of our knowledge, the concerns raised in the RANZCP's submission have never been addressed.

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Australian College of Health Informatics

In their  submission to Department of Health regarding its Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper the college these were some of the 31 recommendations that suggested that the system and its use be improved or which requested more information on the system:

ACHI Recommendation 3: That the Department consider a description similar to "The individual
may have easier access to more information than was previously available about her or his health
status and health care. This may enable the individual, depending on her/his health literacy and interest,
to become more actively involved in caring for her or his health." to describe the core purpose
and function of the PCEHR.

ACHI Recommendation 4: That the Department investigate and consider reliable methods for
individuals to ensure their records are complete.

ACHI Recommendation 5: That the Department clarify if healthcare providers are required to
upload all relevant information to the PCEHR following each encounter

ACHI Recommendation 6: That the Department investigate and consider processes for individuals
to add or upload their own medical history so that they do not need to remember and reiterate
key historical facts multiple times.

ACHI Recommendation 7: . That the Department advise if the current implementation of the
PCEHR complies with the following Australia Standards:

AS/ISO 18308-2005 Health Informatics – Requirements for an electronic health record architecture
Standards Australia HB137-2013 e-Health Interoperability Framework
Standards Australia HB 138-2013 e-Health Architecture Principles

ACHI Recommendation 8: That the Department advise if the proposed PCEHR "opt out" will be
directly linked to “usability” or only the rights of access and if the new governance arrangements
include ‘data governance’ to ensure data integrity, quality and security.

ACHI Recommendation 9: That the Department advise if the current PCEHR implementation
complies with the following Australian standards:

Standards Australia HB222-2006 Australian Health Care Client and Provider Identification Handbook
Standards Australia AS4846-2014 Person and Provider identification in healthcare

ACHI Recommendation 10: That the Department provide more detailed information and references regarding the statement "risks and issues emerging that may require enhancement and adjustment of current processes and the associated legislative and regulatory framework. Twenty-four recommendations were made for improving the HI Service".

ACHI Recommendation 11: That the Department provide more details how the legislative changes/amendments fit into the time- frames for "clinical implementations".

ACHI Recommendation 12: That the Department review if the current PCEHR implementation is appropriate to fulfil the requirement to support the provision of care across all health care domains including the private sector.

ACHI Recommendation 13: That the department investigate and mitigate the risks of a widespread disconnect and "passive opt out" without any deliberate action or thought process by individuals.

ACHI Recommendation 14: That the department investigate and mitigate the risks of mismatching PCEHR records as well as medical identity theft.

ACHI Recommendation 15: That the Department advise if and how the PIA stakeholder consultations in 2009 have been incorporated into existing and proposed PCEHR/IHI legislation and if further PIAs about the PCEHR Concept of Operations been conducted and if so, advise of the findings.

ACHI Recommendation 16: That the Department consider revising the PCEHR's approach to interoperability (national and international), mandating compliance to an agreed set of standards by a given date and a Health IT governance strategy.

ACHI Recommendation 17: That the Department establish a program to mitigate identification problems with the new IHI to minimise the risk of adding to the number of patients suffering clinical misadventure in Australian healthcare facilities and that do with errors involving the IHI should be considered part of, and reported to, a comprehensive clinical error reporting system.

ACHI Recommendation 18: That the Department consider utilising the Australian Institute of Health and Welfare (AIHW) definitions and governance for data elements such as “healthcare” and "health information" to ensure consistency when used in any context, eg legislation.

ACHI Recommendation 19: That the Department undertake a review of all overlapping and parallel legislation relevant to the PCEHR to ensure that inconsistencies in terminology and responsibility are remedied.

ACHI Recommendation 20: That the Department ensure that if drivers' licence, passport, Immicard and other personal identification information is added to the PCEHR, any risks for misuse by hackers and identity theft is mitigated.

ACHI Recommendation 21: That the Department consider that ACeH's brief include data governance and mandating compliance with any one or sets of Australian technical standards by a given date and that Consumers also be represented.

ACHI Recommendation 22: That the Department ensure a suitably qualified statutory authority such as ACeH effectively advise the COAG Health Council on national eHealth policy.

ACHI Recommendation 23: That the Department consider including senior expertise in health informatics, system architecture, networking, semantic interoperability, health data, system evaluation/testing/credentialing, etc. in the governance of ACeH.

ACHI Recommendation 24: That the Department advise if during the period of the trials any further PCEHR funds will be expended on consumer sign-ups.

ACHI Recommendation 25: That the Department advise the details of the design of the proposed PCEHR trials including descriptions of methodology, representativeness, statistical significance and agreed success criteria.

ACHI Recommendation 26: That the Department confirm who would be legally liable if some clinically significant information in the PCEHR has been removed by the individual and a clinician relies on it and treats accordingly, but a misadventure occurs.

ACHI Recommendation 27: That the Department consider that the current approach where the System Operator has a statuary liability for any loss directly attributable to any act or omission by the System Operator is retained.

ACHI Recommendation 28: That the Department consider mandating that a data breach notification must occur in all instances that contain unintended patient care error.

ACHI Recommendation 29: That the department ensure that every healthcare provider needs to have a data governance protocol for key transferable data as well as agreed data standards for such key data.

ACHI Recommendation 30: That the Department clarify if the obligation to use the PCEHR means that there are implications for not using the PCEHR if a healthcare provider does not believe the system will benefit the care management activities/processes of his patient(s).

Observations:

Many of the above recommendations would indicate that the ACHI has some major concerns about the design, implementation and use of the system. Some of them appear to go to issues of patient privacy and safety and which need attention. To the best of our knowledge, the concerns raised in the ACHI's submission have never been addressed.

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Doctor's views in the Media


Bastian Seidel, President of RACGP

Written by Kate McDonald on .

UPDATE: RACGP members have elected clinical professor, telehealth expert and keen Twitterer Bastian Seidel as the college's next president. He'll take up the two-year role in September from Frank Jones. Here are his thoughts on eHealth, the My Health Record and communication between hospitals and general practice.

As president, will eHealth policy be a priority for you or are topics such as the Medicare rebate freeze, healthcare funding or workforce training more important?

I have a personal interest in eHealth and I’m one of the foundation members of the RACGP eHealth network. I obtained membership of the Australian College of Health Informatics and have been a member of the Health Informatics Society of Australia for many years. My focus has been on usability of telehealth consultations and I was one of the first GPs who used telehealth consultations when MBS item numbers were introduced in 2011. I’ve been a regular presenter at the annual Australian Telehealth conference and recently gave a workshop on telehealth at the Digital Health Show in Sydney.

Significant investments have been made into eHealth initiatives, and it’s important that we now focus on evaluating the effects on those initiatives. Priority is and always needs to be, that we improve patients’ clinical outcomes, whether by eHealth or non-eHealth really does not matter. eHealth has to be a value proposition, and funding needs to follow the evidence.

Do you think eHealth/digital health technologies such as electronic medical records have improved the delivery of care to patients in general practice?

Digital health technologies are essential for designing and implementing clinical governance structures in general practice. I could never go back to anything paper-based and I can’t remember when I last did a paper-based clinical audit of our patients. Communication with other providers should of course be electronic, too – it’s cost effective, more immediate and it can be tracked.

Electronic medical records are essential for quality general practice research, too. I’ve recently published a research paper examining over 780,000 medical case reports – imaging doing that with paper-based records!

Is there a particular technology or application that if introduced more widely, could improve the day-to-day work of GPs? (eg secure messaging, digital signatures on prescriptions, cloud-based electronic health records)

Patients and health care providers seem to prefer asynchronous electronic communication. That’s basically encrypted email for most, or integrated platforms. If there was a cost effective encryption option – that would be a game-changer for GPs. I’m using ‘Virtru’, which is still costly, but practical as it integrates well to our ‘Google’ environment at the practice. There was always hope that Medicare Locals and PHNs would supply cost effective solutions to allow safe communication between providers (and patients), but solutions never evolved from a ‘pilot stage’.

IT costs are a major concern for practice owner and operators and frankly I’ve been waiting for a cost-effective cloud-based solution for electronic health records for years now. Practices just can’t afford the IT cost for hardware upgrades which are obsolete after three years. Cloud-based options may offer a solution there. We’ve been looking at Microsoft Azure and Amazon (as their servers are based in Australia), but are not ready to move as yet.

Do you support the overall concept of the government's My Health Record system?

No, personally I don’t. The ‘My Health Record’ or ‘PCEHR’ was central to the National eHealth Strategy. This was based on a commissioned report by Deloitte which claimed that $10 billion could be saved over 15 years if $500 million were spent on eHealth. The program was never meant to improve patient outcomes, it was designed to save money. Years down the line, we’ve already spent $1 billion and are putting an extra $500 million into it now. We’re well over time and over budget.

The program is now ‘too big to fail’ and still has bipartisan political and COAG support. The IT industry loves it. It’s time to critically re-evaluate what we actually wanted to achieve.

Have you ever or do you plan to use the My Health Record system in your practice?

I have my own ‘record’ and it was very tedious to set it up and to activate it. Patient interest has been insignificant despite PR campaigns by the PHN and local hospital authority. I have less than three patients who asked me in the last six months, and of course I’m happy to upload data for them. Most still prefer a paper printout of their records though and some bring in a USB stick.

Does your practice claim the digital health Practice Incentive Program (ePIP) payment, and if so, will your practice be compliant with the new requirements?<

Good question! My practice is compliant, but won’t promote the ‘My Health Record’ system to our patients. Again, we feel that it needs to be patient initiated. Sadly enough, we may miss out on the PIP if patients are not interested.

Do you agree with the RACGP's view that the roll-out of the system needs to be halted while changes are made to make it more usable?
I’m a national RACGP Councillor and therefore company director. Of course I support the RACGP’s view.

Do you support a move to an opt-out model, which is currently being trialled?
It’s interesting that we call it a ‘trial’. As a researcher, I would have loved to the ethics-application and subsequent approval that endorses the ‘opt-out’. What are the outcome parameters? Cost savings again? What are the risks? Have patients been made aware? It’s unfortunately not clear to most clinicians or patients. The example that deceased patients have been ‘opted in’ is certainly not a good sign.

Do you think hospitals in your area do a good job in communicating with you about your patients or could communication be improved?

No, they do not. In Tasmania, the situation is appalling. I gave a talk on it at the last Tasmanian Health Conference. 90 per cent of all general practices are ready to receive and send electronic letters to public and private hospitals, but information from those hospitals is still vastly sent out via snail mail if at all. There are safety concerns if communication is not received timely, and there are clinical concerns. The coroner in South Australia pointed this out recently.

I estimated that the average general practice would send one patient per week back to the local hospital as no communication had been received. That’s 10,000 readmissions per year in Tasmania alone. Discharge letters from hospitals (if received at all), have to be opened, scanned etc. We again estimate that the cost to the average general practice per year just for administrative time is $20,000 per year. The local hospital also sends a paper letter out to GPs when a referral has been received, then again when an appointment has been made. That’s 270,000 letters just for Southern Tasmania. Imagine the cost. We just can’t afford those inefficiencies in the 21st century.

If you think it could be improved, what technologies could best help this?

It needs to be the technology that’s already available in the EMR packages such as Medical Director and Best Practice. It just needs to link and communicate with the hospital sector. Most GPs are ready. It’s the other providers who need to step up.

Do you think residential aged care facilities in your area do a good job in communicating with you about your patients or could communication be improved?

We use shared records in our aged care facilities and communicate with nursing and admin staff electronically via encrypted email. That works well. Often, it’s still the phone call when an acute problem arises. We use video consultations as well. Literally we use any technology that meets the clinical need. That pragmatic approach seems to prevail.

What clinical software do you use in your own practice?

Medical Director and Doctors Control Panel.

If you had to pick one area for improvement in this software package, what would it be?

Doctors Control Panel is working very well for us, it’s the quick overview of relevant parameters (although patients don’t like that their age is displayed so prominently). Medical Director works well. One of the issues though for us is that the patient record can’t be fully used by two providers simultaneously. As with all software packages: ‘there always hope for an improved update…’

Professor Bastian Seidel, MBBS, PhD, MACHI, MRCGP, FRACGP, practices at the Huon Valley Health Centre in Tasmania. He is a clinical professor at the University of Tasmania and a national RACGP Councillor.

Reference: Pulse+IT Interview

Observation. He's not impressed with either the MyHR or the Opt-out trials.

My health records project remains sick

Apr 5 2016 at 4:30 PM Updated Apr 5 2016 at 4:33 PM

The former Labor government introduced a personal electronic health record which despite enormous cost - "more than a billion dollars in cumulative funding" ("Health Band-aid", April 2) - is deemed to be flawed and has signed up a small fraction of the population. Now the Turnbull government is going to tip more money into the renamed My Health Record and make it apply to all citizens with the addition of an "opt-out" mechanism.

Meanwhile, frustrated private health providers are developing their own in-house app-based approaches to records. This is fine but what it means is that instead of thousands of paper-based record silos around the country we will end up with thousands of electronic silos with no interoperability. The government's controlling  "top-down" approach does not work and has failed to engage meaningfully with stakeholders including clinicians.

The government does not have to own this. It has to set standards for and regulate it. If the Prime Minister is serious about innovation he should divert the funds for My Health Record and hold a national competition with a hefty prize for a start-up that can create a truly effective technology platform that will encompass government and private sector health record management.

Dr Quentin Smith
Clapham, SA

Reference: Australian Financial Review

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