I was just sent this:
My Health Record – an essential conversation to have in Australia
By Andrew Howard
The recent My Health Record (MyHR) debate has been essential for Australia – across government, technology and health sectors, as well as, with the broader community. It’s demonstrated how as new technology infrastructures are deployed and technologies evolve, we need to ensure that legislative frameworks keep pace.
And that people, not efficiencies, remain the centre of the system. Because those who engage, support or interact with the MyHR system need to understand it will support their personal health journey now and in the future.
E-health is changing the health sector
We know that new technologies are rapidly changing Australia’s health system and the way it operates in the future will be vastly different to the way it operates today. People will receive more health information through technology-enabled systems and devices. Many consultations will be done virtually, supported by measurement and diagnosis systems that are closer to the consumer’s point of need. Surgery, too, has already begun to be managed by computers. In the future many procedures will be monitored by humans – the same way we trust the autopilot in a plane – if we have extraordinarily well-trained pilots.
But it’s not just about technology – it’s also about people. It’s about how, when and where we access the health system. There are periods during our lives where we will rarely see a doctor and other times when we’ll need to access to doctors, specialists and hospitals – and our health records.
My Health Record – one solution to prepare us for the future
The My Health Record database was developed to help prepare for a rapidly changing health system. First deployed in 2012, it was built to be an index service for important health information. People could opt in to MyHR and control access to their personal health information. Those with MyHR records could ask their clinicians to upload health information to the record – so that others could access the information. There were default settings for what was considered sensitive information – such as a prescription for a medication to control an STD. But in most cases, information would be shared by default.
People could also allow carers and family members access to their medical records through the platform. They could also control which clinicians could see the information. An audit trail provided users with a record of the people or organisations accessing their health data. If an individual accessed the information inappropriately, this would be quickly and easily traced.
Without advertising and government promotion, and limited incentives, the MyHR adoption reached over six million people. Since the MyHR business case, there have been five Health Ministers from both sides of politics who, while needing to re-assess expenditure, agreed that the MyHR is a great initiative and if deployed and managed correctly, will save many lives and reduce the costs of health care delivery.
Privacy and security concerns
The recent decision to move all Australians to MyHR, with the opt out option, raised valid concerns about privacy and security. As pointed out in a Fairfax editorial:
“People who had previously ignored My Health suddenly had to think about the risk that embarrassing, personal information could be hacked and sold or used by governments to persecute or punish. There are precedents including the commercial misuse of social media such as Facebook and a leak of data for 26 million people last year from the British National Health Service.”
In response, Greg Hunt, Minster for Health, announced on 31 July that the MyHR leglisation will be strengthened to match existing Digital Health Agency policy.
This means that a court order is required to release any MyHR information without consent. The amendment will ensure no record can be released to police or government agencies, for any purpose, without a court order.
When it comes to the security of the system, I was directly involved in the designs for defence grade security that was deployed. The security layers were better than the banking sector when it was switched on in 2012. So, with the ongoing investments in the infrastructure, I am certain that the Australian Digital Health Agency, the Digital Transformation Authority and the Department of Health have maintained an equivalent capability.
There is vastly more here:
Let me pick up a few points:
“Without advertising and government promotion, and limited incentives, the MyHR adoption reached over six million people.”
No it was all those Aspen Medical staff signing up people in hospital corridors and all those in the opt-out trials they hardly knew about that got to 6 million!
No it was all those Aspen Medical staff signing up people in hospital corridors and all those in the opt-out trials they hardly knew about that got to 6 million!
“There are also stringent consumer controls that give Australians control over their medical records.
These controls allow individuals to:
- apply a record access code to their entire record so that only those healthcare providers with that code can access their record
- remove documents from their record if they do not want them as part of the record, or apply a limited document access code to restrict access to specific documents, or
- cancel their record at any time to ensure no one can access the information in the record.”
And the evidence for that claim is?
“While the focus has been on encouraging GPs, specialists and hospitals to adopt MyHR, other providers will use the platform as use and acceptance of the system increases. This includes allied health professionals, dentists, aged care facilities, local district nursing services or blood collection services. There are benefits to having a holistic record of a person’s interaction with health or wellness providers.”
I am not sure I want my pathology specimen collector reading myHR – Are you?
“The MyHR was designed on these principles. It is not a central national database of all health record data. The MyHR concept of operations stressed the design of an index to the data sources or ‘repositories’ using templates to structure the clinical information on a common terminology and Health Language Seven (HL7) – the international standard for health care interoperability standards.”
So why does the ADHA talk about “all your health information in one place”?
“The current MyHR and the centralised data store of shared health summaries, referrals and diagnostics is a stop gap until FHIR-based clinical systems are brought online. In five to ten years, the MyHR will likely evolve into an indexing database that accelerates the ability of local systems to interoperate effectively.”
So what we have now is a stop gap system that will evolve over the next decade into what is needed??? What are we to do in the meantime – just put up with a rubbish unusable system?
There is more but it is clear the former NEHTA CEO is not listening to those who wonder what on earth is going on with this program.
Thank you Andrew for explaining all this to us, we really needed the clarity.
David.
11 comments:
They say timing is everything. Certainly raises a few questions. I would like to thank Andrew for not mentioning the fax, make a refreshing change. He makes some reasonable points and if the “MHR” brand was not used it might be a stronger article for it.
Andrew never listened....and there are a few other holes in his claims as well.
Tim Kelsey is no better, his approach is to talk at people, not talk with them and not chance of letting them talk to each other.
The common theme prevailing over the last decade and brought to a head by Andrew Howard's article is that no-one in authority has been listening; as you say "Andrew never listened", but he was not alone.
The Department has never listened, nor did Reinecke or Flemming, and despite all the Submissions made over the last decade no-one has paid attention to some of the most compellingly powerful arguments I have ever read in my 40 years in health and information technology.
As Bernard Robertson-Dunne, I and others have repeatedly said they have never defined the problems, they therefore do not understand the problem(s) they are trying to solve and above all they do not want to listen and they do not want to ask the hard questions probably because they do not know what are the hard questions that need to be asked.
The sooner they engage with us to understand what we have been saying the sooner the barriers to progress will be overcome
"The sooner they engage with us to understand what we have been saying the sooner the barriers to progress will be overcome"
If they haven't engaged by now one has to assume they are sure you have nothing to offer. Pity about that as it is pretty sure those you mention have proven themselves totally unable to get anywhere worthwhile after a decade or more!
David.
I to have had those conversations again and again. Its sort of like Neo meeting the architect, where is apparent this is not the first version of the matrix and it always ends the same way. Usually by the time they actually want to listen things are well and truly falling apart and its a sign that the end is near.
This is the big problem with not letting things fail. Its the collateral damage to the industry not just the wasted taxpayers money that is most concerning. We have had at least 15yrs of limbo where no progress has been made and they don't want anyone else to progress as it would make them appear incompetent. I don't know how many national eHealth leaders I have told that the we simply cannot safely have inter-operable messaging until be have inter-operable messages but I just don't think they understand that level of technical detail. A compliance program for existing standards would cost a few million dollars, but I don't think they want anything else to work.
It could well be that they (the public servants, not the politicians, they know very little about these things) understand full well that what will work well for health care means they don't get to lay their hands on all that lovely personal/health data.
Big data, especially the data that feed AI and Machine Learning, is all the rage these days; it's the latest cargo cult. It's a pity they don't understand the severe limitations, costs and downsides of such an approach. It's certainly not the future of patient centric health care.
Further to my comment of 7:07 AM it should be noted that the peak bodies bear a lot of responsibility for the mess that has been created.
Through their conflicted vested interests and their overwhelming need to ingratiate their organisations with the Government and its health bureaucrats they lost objectivity and failed to hold the Department and the ADHA accountable. Instead they voiced views which they felt would be 'politically acceptable' lest they earn the wrath of those in power. As a result they have contributed greatly to the mess confronting the My Health Record today.
"Further to my comment of 7:07 AM it should be noted that the peak bodies bear a lot of responsibility for the mess that has been created."
A truer word has not been spoken. They are sycophantic rent-seekers.
David.
Andrew, the rot dates back to the mid-1990s. Organised purposeful collaboration with the health sector ended with the shutting down of the Health Communications Network initiative and the selling off of its assets to the private sector. The focus had been on organising information flows to support the delivery of care. The Commonwealth's data interests were subordinated in order to enhance trust and confidence.
The approach supported healthcare providers themselves to determine the nature of the information exchanges and the conditions of flow. A variety of privacy, medico-legal and trade practices issues were sorted in the process and a formal mechanism was established for that purpose. Health technology was in its infancy and benefited from the health sector being clear about what it needed and effectively 'pulling' the technology forward creating a nascent ecosystem in the process.
Bernard is right when he speaks to the latest cargo cult. Good for the consultants and some vendors but the same can't be said for the health sector. The President of the American Medical Association spoke about a year ago of digital dystopia.
Ian is right when he calls for the peak bodies to shoulder their accountability for the mess we have today.
IMHO the problem to be attended is the crisis facing our health system in terms of the growing demands upon it and the implications of that demand on fiscal sustainability. If we can't find a solution we face some terrible decisions.
The real challenge is our understanding of the productivity of knowledge work in service producing industries. We need a new concept and methodology; something the Commonwealth Health Department has admitted to COAG. The manufacturing paradigm does not work. This is no small matter as services are now the dominant form in the economy.
Unfortunately, so-called 'innovative technologies' have been thrust forward as the solution.
The critical question: Is there a willingness to re-open the conversation about the way we understand the challenges and the opportunities available? I and others would like to participate in that conversation. There is some good news on the productivity front.
And the cycle will continue, this article is the way you gain favour and access to ADHA money. I am sure we will see Third Horizon being commissioned to do something.
Post a Comment