24 July 2018

Why I am opting out of MyHealthRecord – for now

MyHealthRecord TheHill

The issue of the MyHealthRecord has been troubling me. I lack the eloquence to express my concerns sometimes, so please bear with me.  I’ve also thought long and hard about this issue and been in active discussion with may leading doctors in Australia on this via backchannels. It is an important topic and one that impacts on everyone.

This is MY opinion and mine alone. I have no conflict of interest to declare and think it is important that individuals make up their own mind on the matter.  There are some excellent articles online and in the media now – I’ve included a list of ‘further reading’ to stuff I found helpful at the bottom of this page.

The Conversation offer balanced arguments for opt in and opt out (click to read).

It would be good to share the information on MyHealthRecord pros and cons with friends, family and so on as there is a limited time to opt out…the period runs for three months from 16 July to 15 October 2018. after that a MyHealthRecord will be created and populated automatically.

If you want a MyHealthRecord, then do nothing – one will be created for you automatically.

If you are unsure, please read and make a decision – unless opt out by 15-10-18 a MyHealthRecord will be created.

Now read on…

I am a doctor.  For me, the cornerstone of our business in medicine is consent and confidentiality. It’s pretty much the sine qua non of our job – along with “primum non nocere” (first do no harm).  I take this seriously, as do my colleagues.  We protect your health information and we like to ensure that your health records – whether visiting the primary care doctor or the hospital – remain accurate and confidential.

Perhaps THIS is why the shambles of the #MyHealthRecord concerns me.

I am not a Luddite.  I consider myself tech-savvy.  I welcome the use of technology in medicine.  I am also acutely aware of the problems we face in health care and the need to improve safety.  Most of the problems revolve around communication.

Ironically one of the biggest problems we face in healthcare is the disconnect between various systems.  This is a daily frustration for both patients and clinicians.  Despite best efforts, primary care doctors are frustrated that discharge summaries and letters routinely arrive several days – or even weeks – after an episode of care in hospital or in a specialist clinic.   We commonly hear the exasperated cry “But isn’t it all there – on the computer?“.  If only.

The failure of different parts of the health system to communicate and perform a proper handover of care is a major safety risk. Particular danger points include knowing what has happened in a recent episode of care (admission diagnosis, changes in medications, actions for followup) and the danger of drug-seeking behaviour or ‘doctor-shopping’ – in particular the abuse of powerful S8 medications like benzodiazepines and opiates.

So what on earth is the MyHealthRecord and why have I opted out? Read on and inform yourself

Many clinicians are keen for the idea of an electronic health record which could be made available to patient and clinicians regardless of location. Wouldn’t that be amazing?  It could hold details of recent investigations (blood tests and imaging), a summary of medical history and so on.

WHAT IS THE MY HEALTH RECORD?

You can read more about the MyHealthRecord here.  Put simply, My Health Record is an online summary of your key health information.

It is NOT a replacement for your health care providers clinical records.  It is – at best – a summary of health information.  It is controlled by you, not your doctor.  You have control over what is uploaded and can delete records.

Sounds great. So why am I opting out?

A CLINICAL RECORD NEEDS TO BE ACCURATE AND USABLE

Most clinical software is incredibly powerful.  The clinical software on your GPs desktop presents an easy-to-navigate summary of your health information, with the option to easily delve into past notes, medications, family history, letters in and out, results of blood tests and imaging … all within a few mouse clicks.

We pay a LOT for this software and it is heavily protected with passwords and backups.  It is highly functional and (mostly) works well compared to paper notes.  We can easily navigate an entire file, send a letter, print a script, order imaging and so on within the tight time constraints of a typical 15 min appointment.  The software allows us to be highly effective in sorting vast amounts of health data.

But of course the file is held by your clinic.  Which means that your health information is not available to any random clinician who wants to search your record.  Staff are sworn to protect your information and we can easily audit WHO opens a record.  The software is constantly evolving in response to clinician feedback an the major clinical software providers charge a motza for this.  It’s SO much better than the old system of a paper file and notes.

This is NOT the MyHealthRecord.  Instead of a nuanced system that integrates into the clinical workflow, the MyHealthRecord has been likened to a ‘shoe box’ of files.  Navigation is difficult as the user is faced with a smorgasbord of PDF documents which can be slow to load … and hard to collate and assimilate.  This is likely o get worse as more information is added, unless the content is aggressively curated.

Moreover whilst the MyHealthRecord tracks when a patient file is opened, this tracking is to an organisation, not an individual.  So if Hospital X opens your file, you really wont know if it’s uber-secialist Prof X who is perusing your file…or a bored pharmacist, an idle radiographer or the admin clerk.  They will all have access.  Hmmmmmm..

There are concerns that the MyHealthRecord fragments communication, rather than enhances!

IS MY HEALTH RECORD AN ACCURATE SUMMARY OF YOUR HEALTH INFORMATION?

It may be – it may not.  There is a term used in information technology; GIGO or ‘garbage in garbage out’.  Your health summary in MyHealthRecord may be accurate and recent…or it may contain mistakes or be outdated.

This is a problem.  Unless the record is aggressively curated and maintained, there is a risk that the information becomes unreliable – and therefore dangerous for doctor and patient.

At present the responsibility for uploading a health summary has been placed firmly and squarely with primary care.  Problem is, most doctors are already busy and their focus is on maintaining the fidelity and accuracy of their records.  They will not be able to ensure that the online MyHealthRecord is up to date, unless integration with their clinical software is seamless.  And it is not.

To complicate matters, this is a PATIENT-CONTROLLED record.  I think it’s great to empower patients to manage their records, I really do.  But as clinicians our retros often need to contain harsh truths.  The history of drug-dependence may be important if an individual presents to repeated doctors seeking opiates…and yet individuals can remove contents of the record in MyHealthRecord, making it unreliable.  Similarly details of important family history, of domestic violence, of infectious disease status may be hidden from the clinician.

That shouldn’t be a problem if there is a healthy doctor-patient relationship and partnership, with mutual trust.  The records we keep in our clinic are sacrosanct and we do not share them.  But they are an accurate record of medical information – we do not omit details nor allow the record to be expunged unless inaccurate or untrue.  It’s an important part of the trust placed in us.

BUT AREN’T DOCTORS  PAID TO USE MY HEALTH RECORD?

Short answer? No.  Your GP is a private business.  The clinic will have invested heavily into IT infrastructure which includes secure download of results and documents, purchase of a clinical record system, ensuring recalls are managed and so on.  Their focus is on maintaining the clinic records and in ensuring patient notes remain secure. The cost of seeing a doctor covers not just the doctors income, but staff wages, rent, utilities (phone, gas, electric, water, internet), equipment, and of course the vital IT infrastructure.

It is true that there are Practice Incentive Payments made to accredited primary care clinics – and that there is a payment specifically for IT.  In the past this incentive payment would go some way towards the annual cost of a practice IT budget and was used to ensure secure messaging, prescribing electronically and ensuring the patient database contained useful information such as diagnoses etc for targeted recall (e.g. health checks, overdue cervical smears, immunisation registry etc).  But in recent years the ePIP has become dependent on mandatory use of the MyHealthRecord.

In the clinic in which I work, we have made a decision to forgo the ePIP funding (not an inconsiderable amount – about $23K per annum if I recall) due to concerns over the usability and ethics of the MyHealthRecord.  This bites massively into the practice budget, but we take the issues around MyHealthRecord so seriously that we are currently not using it despite the lure of extra funding!

Other places may be using MHR – and it is certainly true that the Australian Digital Health Authority has an influence on the Primary Health Networks to promote the use of the MyHealthRecord.

Some clinics will have adopted the system because of the lure of the ePIP funding (in fact many general practices are dependent on this funding to survive as the Medicare rebate for a GP consult is currently running at around 50% of the AMA recommended consultation fee).  As such there are reports that many practices have been signing up their patients in order to access the ePIP funding – but not always with informed consent!  You’d be wise to check and see if a MyHealthRecord has been created for you already without your knowledge!

AN ONLINE CLINICAL RECORD? ARE CLINICIANS LINING UP TO USE IT?

Do you remember the queues outside Apple Stores for the latest iPhone in recent years?  As discussed above, clinicians of all specialties are heavy users of clinical software for notes.  We pay a significant amount each year for a software licence, and our annual IT expenses are considerable.  But it’s worth it, for the ease of practice.

If the MyHealthRecord was as useful and effective as existing clinical software, there would be no need for the current ‘opt out’ system nor the press-ganging into use by tying ePIP funding to MyHealthRecord use.  Instead clinicians would be queuing up to use it (like at the Apple Store) and even paying to use it!

Suffice it to say the MyHealthRecord is not good enough – yet.  This may change…

In the meanwhile, the clinician donkey is being goaded into use of this system by a crude combination of carrot and stick.  A shame, because we have existing software that works well and are open to using a system that replicates this across locations.

But there are additional risks in the MyHealthRecord that concern some (many?) clinicians…

BUT WON’T IT BE BETTER TO HAVE ALL OF MY HEALTH INFORMATION IN ONE PLACE?

The MyHealthRecord is designed to ‘vacuum up’ health information – this might be health summaries from your GP, discharge summaries from the hospital, PBS data on prescribing and MBS-rebated item numbers from your doctor visit.  Ideally it would also be a repository for information such as organ donation, advanced care directives, immunisation and pregnancy etc.

At the moment this data is spread across many different unconnected systems. Some of it (like PBS and MBS data) is already being collected and has been for years. But it’s not been tied together in one place…until now.

Health data is big business.  There is now a ‘honey pot’ of data. both at individual level (your prescriptions, medical history, address, demographics etc) and at a population level (disease prevalence by geography, age and so on).

Who wants this?  Well – it seems everyone!  Not just the primary intended users (health care providers) but also hackers and insurers.  I am no expert, but there are plenty of IT and privacy experts out there – and they seem to be unanimous in that aggregating all of this data into one area is almost unprecedented and that there will be unintended consequences with we may not have considered.

So called ‘secondary use’ of health data from the MyHealthRecord is a topic that is seeing a LOT of airtime in recent days, ever since the MyHealthRecord ‘opt out’ period started.

This is sanctioned usage, not hacking…although that is another can of worms entirely.  This week the electronic health records of Singapore were hacked – estimates are that 25% of eHealth records were accessed unlawfully.  There have been similar tales from Canada, USA an the UK.  But apparently it ‘can never happen’ here in Australia…

My personal feeling is that the risk of hacking is low. However the risk of unintended or unauthorised (unexpected?) secondary usage of your health information is very high.

As a clinician I am concerned that – under the current system – there is no informed consent in how your record will be used by others.  

From what we can gather, the ‘default’ security settings in MyHealthRecord are set to allow such usage. These who are so inclined can ‘rock down’ the security settings in MyHealthRecord – the data so far suggest that only 0.1% of users have done this, perhaps reflecting the fact many records exist but are not being actively managed by the user.  Additional barriers such as access to internet and being reasonably tech-savvy and health-literate are also contributors.

WHAT ELSE COULD MY HEALTH RECORD BE USED FOR?

The privacy terms and conditions of the MyHealthRecord are alarmingly complex and the default setting is for the contents of your MyHealthRecord to be available to users and for all content to be uploaded.

This has many privacy experts scratching their heads..until you realise that the Head of the programme, Tim Kelsey, is on the record as saying “noone who uses a public service should be able to opt out

Secondary use might include by researchers, by agencies such as the police, courts, ASIO, Centrelink or even health insurers. There is more information on secondary use from the Govt here.

The MyHealthRecord Act includes the authority for Digital Health Australia to disclose information for law enforcement purposes, including: (My Health Records Act s70(1))

  • (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.

These broad criteria allow a wide range of bodies access to My Health Record data, without there necessarily being a requirement for a warrant – and unlike the primary records held by your healthcare staff, ADHA does not need to notify clinicians (or patients) that their records have been accessed.

MyHealthRecord users can ‘lock down’ the controls over who can access their record…although there are overrides.  This does require a high degree of engagement with the MyHealthRecord in order to understand the implications and be able to modify security settings for use. to date only 0.1% of MyHealthRecords have had their security settings adjusted by the user – implying wither folk have a record and don’t know about it…or they lack the technical and health literacy to manage this.  Is this informed consent?   I am not a lawyer, but suffice it to say that privacy experts and social rights lawyers are raising consistent concerns about potential secondary use.

I can only speak from my experience of insurers and employers, and the impact of unwanted consequences from their access to health records.  It is not uncommon to receive requests for access to a patients medical records (let’s say for insurance purposes).  We NEVER release information unless with the consent of the individual..and of course consent is in itself nuanced and contextual.  I have seen examples of patients denied access to the military or have their insurance premiums loaded, because their file contained reference to ‘anxiety”.  Never mind that this related to a specific, single espied (e.g. workplace conflict, school exams or bullying etc)…instead this info is taken out of context by another agency and used.

Can you imagine if insurers had access to MyHealthRecord?  Either for individuals or populations?  this could result in individuals being disadvantaged due to disclosure of their medical history…or even by association “Ah Mr X..I see you live in rural area Y, where there’s a high prevalence of alcohol use and nicotine dependence, plus ischaemic heart disease. Your health premium will be higher than if you lived in the city

Think I am exaggerating? Have a read here – NIB chief executive Mark Fitzgibbon is hoping the private health insurance fund can get permission from its 1.5 million customers to access their digital health record, despite mounting privacy and security concerns.

Meanwhile the ‘secondary use’ seems to be a major goal of Australian Digital Health Authority boss Tim Kelsey (who was responsible for a similar scheme in the UK):

“Kelsey has repeatedly characterised the scheme in very different terms. The government’s intention is “to harness the power of the modern information revolution to empower and enable clinicians to offer industry and entrepreneurs and innovators a new platform for delivery of new services”, he said in an interview last October.

“It’s about creating new industrial entrepreneurial opportunities for great apps developers over here; existing large vendors over there – to engage with the public estate, to transform the experience for citizens in England [sic],” was his message to the Committee for Economic Development of Australia.”

– source https://www.theguardian.com/commentisfree/2018/jul/20/there-is-no-social-license-for-my-health-record-australians-should-reject-it

ISN’T THIS JUST PARANOIA? CAN’T WE JUST TRUST THE GOVERNMENT?

Possibly.  As stated above, the central tenets of health care are based on principles such as consent,  autonomy, beneficence, trust, and on confidentiality.

Suffice it to say that many clinicians have concerns about the implementation of the MyHealthRecord and are ‘opting out’ for now.  The “precautionary principle” – we can always ‘opt in’ later.

Who knows, if enough of us do this, the system may actually be fixed?!

But for the meanwhile, consider this  from the Law Council

The Law Council does not consider that the policy decision to adopt an opt out model for creation of My Health Record supports a further decision to adopt an opt out model for secondary uses of My Health Record (i.e. health, clinical and medical research). Rather, the Law Council recommends that the opposite should be the case: that is, that the default creation of a My Health Record for an individual should lead to policy caution in adopting a default consent for secondary uses of that individual’s My Health Record. Measures should be adopted in the framework to require ‘opt in’ for the use of personal data for secondary purposes to ensure that any use of personal data is by consent, as required by the legislation.

Confused?  So was I.  Basically the ‘opt out’ model raises concerns as many Australians aren’t aware they have (or soon will have) a MyHealthRecord created for them and that it may be populated with data.  They are unlikely to understand the potential problems of such a record, not what ‘consent’ to a record will result in. The default settings for a new MyHealthRecord are to allow secondary usage….

So what does the former Digital Health Transformation Head recommend?  He stated he would opt out!

Former Digital Transformation Office chief Paul Shetler has labelled the rollout of the My Health Record “significantly flawed”, citing issues with its security model and design as barriers to take-up

This is damning from a former project lead…read more here

WHY HAVEN’T I HEARD ABOUT MY HEALTH RECORD YET?

This is where the rubber REALLY hits the road.  The MyHealthRecord is an ‘opt out’ system.  And the opt out period has already started.  Didn’t you see it on TV?  The Adverts from the Government?  The letters in the mail?  The ad campaigns?  No …me neither – almost noone knows about it!

This is almost unheard of and I feel is strongly against the principles of consent, autonomy and beneficence which we hold so dear in clinical practice.

WHAT DOES AN ‘OPT OUT’ OF MY HEALTH RECORD ACTUALLY MEAN FOR ME?

All Australians will have a MyHealthRecord created for them…indeed some may already have had a record created without there knowledge or without fully understanding the implications.  The scheme has been aggressively ‘marketed’ in hospitals and at Government-sponsored events, with clipboard-wielding smiling assistants signing people up “s your records are available wherever you are’ -it sounds too good to be true…and of course the devil IS in the detail!  Many records created are empty ‘ghosts’ – clinicians have failed to see the need to use it and so the system has languished with plenty of people signed up but little clinical usage.  With estimates of between $1-2 Billion spent already, the Government has cynically moved from an ‘opt in’ system to an ‘opt out’ one.

Australian have until 15 October 2018 to opt out of the system.

If you fail to do so, a record will be created for you and remain until 30 years after your death (or 130 years if date of death unknown).

WHAT DO I NEED TO DO?

If you wish to ‘opt out’ you need to do something.  Only you can opt out (your doctor cannot do this for you, neither will all those smiling folk from the Primary Health Network who might have signed you up in the first place).

Importantly ‘doing nothing’ means that you will be signed up at the end of the opt out period and that this means a record cannot be removed.  That’s it. You ‘ll have a MyHealthRecord forever.

So your options if you decide to opt out are:

Do it through the MyGov online portal – https://my.gov.au/

Do it through the Opt Out link – https://www.myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record

Do it with Medicare via telephone – 1800 273 471

You will need your Medicare card if you ring up and additional identity (passport or drivers licence) if you do this online.

There are of course obvious difficulties if you don’t use the internet, don’t have a phone, don’t have a drivers licence or passport.  Or if English is not your first language,ou are disadvtanged or disengaged from health care and if you aren’t tech savvy.  One might almost think that the system was engineered to make it hard to opt out?

I do hope that folk will consider their options and – if they do decide to opt out – to make the effort now.

SO WHAT ARE PROFESIONAL HEALTH BODIES DOING?

It depends who you speak to!  The offical line seems to be that the peak health bodies support the MyHealthRecord and you will certainly see this promoted by Medicare.

It is, of course, somewhat more nuanced.  Most health bodies support safety, easy access to contemporaneous notes and security.  We’d all love to see a workable eHealth system.  I do wonder if most f the initial support will have faded as the system moved from the proposed ‘opt in’ to the current ‘opt out’ model…and that politics and accord between Government and Bodies may belie the underlying feelings.

Politics!

Those who are most ardent in calling for the MyHealthRecord may be those with most to gain from access to data, yet bear little of the responsibility for collating and curating it.  The medicolegal responsibility for curating the MyHealthRecord remains untested, but most GPs are concerned it will fall to them.  this is an additional burden, as is pressure to discuss the MyHealthRecord and then upload a summary every consultation in an already time-poor and relatively financially-pressured dynamic.

Tellingly though, the RACGP neither supports nor condemns the MyHealthRecord [ADDIT – this statement has been appropriate questioned and it appears the College DOES support MHR – a pity, given the problems of ‘opt out’ and ‘standing consent’. See comments at the end].

As for individual doctors?  Well – we do talk.  There are online communities here clinicians discuss this sort of thing.

Anecdata from ‘Business for Doctors’ is that reportedly the ratio of doctors ‘opting out’ vs ‘remaining in’ is as high as 10:1 (I have not seen this data firsthand, this is hearsay)

Online polls on the popular ‘GPs Down Under’ Facebook group are consistently showing opt out rates of between 2/3 and 3/4 GP respondents.

Most folk will recommend opting back in to MyHealthRecord once the issues are addressed.

WELL,WHAT DO CLINICIANS NEED?

We can be a demanding mob, clinicians.  But our interests are mostly fairly simple – do the right thing by the patient, make sure we maintain confidentiality, keep your trust and don’t do something we say we wont or which jeopardises the above.

In clinical practice, we’d love to see:

– real time monitoring of prescribing to help reduce doctor-shopping and problems with drugs of dependence (death, diversion, dependence)

– secure messaging between clinicians (let’s get rid of the fax and the antiquated notion of dictating a letter, then waiting a week or two to have it typed up, checked and then snail mailed out).  We need to ensure that health information is handed over at pint of discharge from care (whether attending ED, outpatient or inpatient hospital stay) – preferably in writing to avid misunderstanding.  A secure system to allow letters and discharge summaries exists, but is under utilised especially in the Public Hospital system.

– a repository of essential information such as Advanced Care Directives (this is so important, but so fw folk have an ACD. It’ s a minor miracles to get one..but wrongly MyHealthRecord doesn’t allow the doctor to upload it – it HAS to be done by the patient.  So an already uncommon event is likely to be rare under this system)

– a genuine ‘opt in’ system: I think that is something we could all support, as it allows a nuanced discussion of pros and cons and keeps the patient centre in control of their information The  ‘opt out’ model is anathema.

– an electronic health record system that is easy to use, portable and as effective as existing primary care clinical software.  Ideally an online clinical NOTES system, not just a SUMMARY. Why is  that important?  Because reading notes allows the clinician to understand nuance and background to decisions made by the previous clinician. tis is  important and can guide further decisions, far more than a simple summary.

– maintain confidentiality and security, and absolutely prohibit secondary use by ‘big business’. Maintain the trust currently enjoyed by the profession – I fear this could be lost with the poor implementation of the current MyHealthRecord….

Interestingly most GP clinical software is evolving this way, with likely inclusion of shared summaries and health info, recalls and results integrated into both clinicians software AND smartphone or tablets used by the patient.  A true partnership of shared health info.  All of this may make the MyHealthRecord even more redundant.

BUT SURELY THIS WILL MAKE IT EASIER IN AN EMERGENCY?

Not really.  We keep hearing this line being trotted out by pro-MyHealthRecord advocates. It sounds right doesn’t it?  Enrol now – the MHR could save your life!

Look it is certainly true that we LIKE to have ready access to your health information in a crisis.  But here’s the thing – if you are involved in a car crash, the structured approach to your resuscitation – whether at the roadside or in the Emergency Department – is designed to focus on management of the immediate threats to life and treat them.  History IS important – but often comes down the track…

Most times we can get a collateral history form bystanders, friends, family..or old notes.

If you have a particularly complex history or allergies, you would be as well to carry a list of medications and list of conditions in your wallet or purse.

MedicAlert bracelets are especially useful.

And there is always the ‘In Case of Emergency’ or ICE function on most smartphones, often accessible via the lock screen….you can read more about how to configure your divide in the ‘Further Reading’ below.

Bottomline, your clinician is unlikely to be spending time logging into MyHealthRecord to search a list of PDFs, when they are resuscitating!

Moreover any clinician worth their salt will be taking their own history not relying on the notes. because often they are inaccurate or not up to date. GIGO!

IT’S NOT THAT I DON’T TRUST YOU DOCTOR, BUT I WANT TO MAKE MY OWN DECISION

BRILLIANT !  That is exactly what this is about…making your OWN decision..not being swayed by your doctor, nor having a record created automatically by the Government.

Most importantly this is about YOU having control of YOUR health record.

Feel free to use the MyHealthRecord – but be aware of what involves and the need to tightly screw down security settings and access, as the default is for these to not be engaged.  I think that very very few people will actually make the effort to do this as it requires a high degree of motivation, health literacy and IT skills.

Be aware that not all your information will be available (clinics that sent using the system willow be uploading) and that the adage ‘garbage in, garbage out’ applies.  The record is only as good as what YOU upload and curate.  think of it lea manila folder of health info…but one that may be less secure online than tucked away in a wardrobe OR held at your clinic.

Think hard if you NEED a record online – it is unlikely to save your life in an emergency, wont be available to many users (including travel overseas)and there is unprecedented potential for secondary use – whether by agencies that the Government authorises…or unauthorised use.

I’M STILL CONFUSED. WHAT SHOULD I DO?

Don’t panic – you have until 15 October 2018 to ‘opt out’.

And you can always ‘opt in’ later once concerns are addressed.

I would suggest speaking to friends and family about this, as well as your trusted health professional. Ask always what there is to gain by opting in or out – both for you and for those telling you to opt in or out!

Read about it online or in the papers – I have included some links below…

Remember that ultimately the BEST health outcomes are going to be in partnership with your clinician, with honest and open communication, underpinned by principles of confidentiality, trust and ‘do no harm’.

Ultimately this is YOUR decision and you should make whatever decision works best for you.  Your doctor will support you in this.

Dr Tim Leeuwenburg
Kangaroo Island, South Australia

NB: I have no conflict of interest to declare.  I note that both Labor and Liberal Governments have been involved in the implementation of the eHealth system (formerly Patient Controlled Electronic Health Record, PCEHR and now badged as MyHealthRecord).  My opinions are mine alone and do not represent those of the Kangaroo Island Medical Clinic. At this stage the Clinic is not uploading summaries to the MyHealthRecord and does not receive Government ePIP funding.  The commentary here is made in good faith based on my understanding of the MyHealthRecord. I am happy to declare that I have opted out of the MyHealthRecord at this time.  I will be first in line to ‘opt in’ once my concerns are addressed.  Individuals should make their own judgmental the pros/cons of the system and understand that I will support them as their clinician regardless.

Further reading

How to opt out of MyHealthRecord

https://www.myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record

 

Arguments Pro/Con

The Conversation – Case for Opting IN

https://theconversation.com/my-health-record-the-case-for-opting-in-99850

The Conversation – Case for Opting OUT

https://theconversation.com/my-health-record-the-case-for-opting-out-99302

Problems with the MyHealthRecord roll out

There is no social licence for MyHealthRecord

https://www.theguardian.com/commentisfree/2018/jul/20/there-is-no-social-license-for-my-health-record-australians-should-reject-it?CMP=Share_iOSApp_Other

Top ten awkward questions to ask about MyHealthRecord

http://medicalrepublic.com.au/top-10-awkward-questions-mhr/

Errors and incompetence’: Australians split over government’s opt-out digital health records

https://www.smh.com.au/technology/errors-and-incompetence-australians-split-over-government-s-opt-out-digital-health-records-20180720-p4zsnc.html

The MyHealthRecord debate is getting silly…but Govt is at fault

https://www.zdnet.com/article/my-health-record-opt-out-debate-is-getting-silly-but-government-is-at-fault/

Experts give MyHealthRecord a scathing review

https://www.news.com.au/technology/online/security/australian-governments-controversial-my-health-record-system-slammed-as-failure/news-story/9f45df2927fe0b85c28a461343dd4704

Ex Digital Transformation Agency Boss advises ‘Opt out’

https://www.itnews.com.au/news/ex-dto-chief-slams-significantly-flawed-my-health-record-498576

Former head of Digital Transformation Agency slams ‘opt out’ model of MyHealth Record

http://www.abc.net.au/news/2018-07-18/my-health-record-former-digital-transformation-boss-has-concerns/10006788

Why I am opting out and you should too

https://www.theage.com.au/technology/why-i-m-opting-out-of-the-government-s-digital-health-record-and-you-should-too-20180715-p4zrna.html

MHR – cybersecurity and privacy

https://www.theguardian.com/australia-news/2018/jul/16/my-health-record-privacy-cybersecurity-and-the-hacking-risk?CMP=soc_568

Breach inevitable in digital health records

https://www.smh.com.au/technology/breach-inevitable-in-digital-health-records-20180715-p4zrmb.html

‘Zero confidence’ in opt out program

https://www.smh.com.au/technology/zero-confidence-labor-mp-in-push-for-opt-in-digital-health-records-20180722-p4zsxm.html

As a doctor, here’s why MyHealthRecord worries me

https://www.couriermail.com.au/rendezview/as-a-doctor-heres-why-my-health-record-worries-me/news-story/0584c4b6ff55f2936fe4e84f3985bdb6

The MHR story no-one should miss

https://www.zdnet.com/article/the-my-health-record-story-no-politician-should-miss/

 

The risks of secondary use

MyHealthRecord identical to failed UK scheme privacy expert says

https://www.theguardian.com/australia-news/2018/jul/22/my-health-record-identical-to-failed-uk-scheme-privacy-expert-says

Insurer boss likely to insist on access to MyHealthRecord for members

https://www.smh.com.au/business/consumer-affairs/we-desperately-need-this-data-nib-boss-wants-members-digital-health-records-20180719-p4zsha.html

Head of MyHealthRecord Tim Kelsey wants your data regardless of consent
https://www.crikey.com.au/2018/07/18/health-record-head-opt-out/

No one who uses a public service should be allowed to opt out’: My Health Record head

 

How to ensure your health info is available in an emergency?

Setting up your iOS device for ‘In Case of Emergency’

https://support.apple.com/en-au/HT207021

Setting up your Android device for ‘In Case of Emergency’

http://www.androidguys.com/tips-tools/how-to-create-an-emergency-contact-on-your-smartphone-ice/

 

Opinions from blogger GPs

Opt in or Opt out – but whatever you do, make a decision (Dr Thinus van Rensburg)

https://tvren.wordpress.com/2018/07/16/opt-out-or-opt-in-but-whatever-you-do-make-a-decision/

Opt out here – Partridge GP (Dr Nick Tee, Adelaide)

MyHealthRecord – Opt Out Here

Former KI doc Dr Mark Raines blogs here on the MHR

https://rain0021.wordpress.com/2018/07/21/myhr-opt-out-opt-in-or-just-ignore/

Dr Ruth Armstrong &  Trent Yarwood on ‘Croakey’

https://croakey.org/staying-in-or-opting-out-my-health-record-goes-viral-for-all-the-wrong-reasons/

Tasmanian physician and IT expert on lack of utility of the MyHealthRecord system

https://www.theadvocate.com.au/story/5535058/tasmanian-doctor-raises-questions-on-my-health-record-process/

Dr Trent Yarwood’s excellent collation of MHR pros/cons and articles

https://yarwood.id.au/myhr-digest

Dr Tim Leeuwenburg is a GP on Kangaroo Island in South Australia. This blog was originally published on KI Doc.

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7 Comments on "Why I am opting out of MyHealthRecord – for now"

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Haroon
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Haroon
2 months 27 days ago

Great Article Tim !!!

What are your thoughts on the OpenNotes Model ? It is currently being used by 26 Million people in the US

https://www.opennotes.org

Would this be a more workable model ?

Nicholas Cooke
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2 months 27 days ago

Brilliant. Thank you Tim for a well researched, well referenced, and one of the most thoughtful articles I have read in a very long time. I am not connected to any GP forums but your thoughts and your perceptive points illustrating your concerns are extremely apt.
I have reached the same conclusions and I and my dependent children opted out at the first opportunity and I will persuade my adult children to do the same.

Sue
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Sue
2 months 28 days ago

Comprehensive summary thank you very much Tim.

Jaded
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2 months 28 days ago
A most eloquently expressed article Tim. I agree, outside the concerns of WHO looks at your data, and WHO may hack into your data, and WHICH government departments will be crossing referencing your data, the bottom line is the socialist inspired PCEHR (aka MHR) is useless as not one single person has addressed the fundamental flaw that the record may be “doctored” by its’ owner and therefore incomplete – and we all know an incomplete record is dangerous and therefore useless. Everyone involved has had more than a decade to fix that one big flaw ……… and yet political correctness… Read more »
Hugh Nelson
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Hugh Nelson
2 months 28 days ago
The MyHealthRecord predecessor spent two billion dollars for no result, for the very simple reasons exemplified in this very long post. People like to blah. If you want privacy – go and live on a desert island without any communications or financial services – otherwise, just get over it. There are deficiencies in health information that affects the health of people and MyHealthRecord can help. No system guarantees privacy together with useful access to patient care information. No system guarantees that doctors will always behave ethically. All we can do is encourage good practice and discipline people when they misuse… Read more »
Concerned GP
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Concerned GP
2 months 23 days ago

The fundamental problem and reason why the MHR will not work is that the government own’s the data and can do what they want with it. I’ve had patients tell me their car registration in the UK increased 30% overnight because their insurer had ‘discovered’ that they were now a diabetic. (https://www.telegraph.co.uk/news/health/news/10906390/Millions-of-NHS-records-sold-to-insurance-firms.html). Hugh, do you think the government was ‘punished’ for giving data to Google (https://www.independent.co.uk/life-style/health-and-families/health-news/nhs-google-medical-records-data-sharing-16-million-a7011891.html)

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