This appeared last week:
Personas and Scenarios for the National Electronic Health Record
December 29, 2017
Over 500 citizens of Ireland, including clinicians, patients, healthcare workers, carers and others from across the Health Service and broader society, all contributed to the publication of the finalised Personas and Scenarios. The Personas and Scenarios will form a key foundation for the National Electronic Health Record programme and the Clinical Strategy programme. A total of 168 Personas and Scenarios have been created and have been held up as best in class by WHO as a method of engagement.
The user-centred design development of the Personas is truly putting the patient at the centre. This type of collaboration encourages a more open and participatory democracy in our health service. eHealth Ireland worked with patients and healthcare professionals to develop Personas and Scenarios that are specific for Ireland to ensure that the procurement of an electronic health record for Ireland will be specifically designed for Irish citizens and healthcare professionals.
See here - Only about 3 mins but very useful:
Jane Carolan, Interim CIO said:
“While this is a key milestone for the National EHR Programme we will continue to welcome input and participation to ensure that these Personas and Scenarios remain current and complete even further over time. I am personally delighted at the level of clarity conveyed in the Personas and Scenarios and the levels of ambition for our National EHR Programme which we are looking forward to realising in the future.”
“While this is a key milestone for the National EHR Programme we will continue to welcome input and participation to ensure that these Personas and Scenarios remain current and complete even further over time. I am personally delighted at the level of clarity conveyed in the Personas and Scenarios and the levels of ambition for our National EHR Programme which we are looking forward to realising in the future.”
IPPOSI a patient-led organisation involved in the creation of the personas, CEO Derick Mitchell said:
“From the patient perspective, these clinically-validated Personas and Scenarios are quite brilliant in making the benefits of Electronic Health Records very real. In IPPOSI, we envisage these as forming the cornerstone of the future engagement and communication processes between Irish clinicians, health service workers & patients which will make a National Electronic Health Record a reality in Ireland.”
“From the patient perspective, these clinically-validated Personas and Scenarios are quite brilliant in making the benefits of Electronic Health Records very real. In IPPOSI, we envisage these as forming the cornerstone of the future engagement and communication processes between Irish clinicians, health service workers & patients which will make a National Electronic Health Record a reality in Ireland.”
More here:
This article describes the very coda of a process to develop the system objectives and functionality for an Irish National EHR System.
The process to get to where they presently are began a few years ago.
You can read all about it here:
A good place to start is to have a browse of this document:
It is really impressive how the consultation processes have operated and how the focus appears to be one of technology being shaped to serve patient and clinician needs.
Ireland is recovering from an economic calamity (the GFC as we call it) and is very much focused on both adoption of the best approaches from all over the world (they are being a slow follower!) and only doing what is demonstrably going to make a difference.
I very much liked their Cloud First Policy.
Browse for yourself but this team seems be a sensible number of adults seeking reasonable outcomes in reasonable timeframes.
David.
21 comments:
The trick will be in retaining traceability, NEHTA was founded on this approach but lost its formal architecture around the same time they announce the year of delivery and then the PCEHR. Solution lobbyists seem highly skilled it denouncing architecture disciplines.
The Irish approach is built on interoperability and no central database.
The Irish electronic health record is virtual and brings together point of care systems, it doesn't try and duplicate anything. It's also driven by health care need, something that is sadly missing from the ADHA strategy,
The consultation/research process involved looking at what had been done around the world. The implication being that they rejected the Australian approach. Which isn't a surprise really.
To be fair Bernard at the time of PCEHR, such approaches where all the rage, France and the UK where upto their respective necks in them. Like France and the UK we will come to see that things have moved on and there other other ways of meeting the requirements
I was fairly impressed with the Irish strategy when I first read it about 2.5yrs ago. Although very abstract and high level (at that time) it appeared to be on the right track. On the other hand so did NEHTA at first.
Interestingly the Irish document from 2015 has an appendix which gives an overview of eHealth in several other countries. For Australia it states that the national identifier program has been "relatively successful" but then goes on to say:
"Progress has been quite slow to date with a PCEHR uptake of
around 85,000 people as of February 2013 with more than 1,470
provider organisations registered. In May 2013 over 187 pharmacies
will go online on the National Prescription and Dispense Repository,
featuring a detailed medication history, medications brand and
prescribed strength, dosage and dates for prescription and
expiration. Telehealthcare activity was quite strong however. As of
the end of 2012, there had been 61,000 telehealth consultations,
involving 7,200 practitioners and 28,000 patients. There has been
strident criticism of Australia’s eHealth policies with privacy and
security being at the forefront of concerns."
Nothing much has changed - the promises are still promises.
I am sure Tim will be off to Ireland soon on a fact finding mission, I can see him putting on a thought leadership paper on interhippyoperty and then pitch he is a world leader in this field and look to secure a nice job in the Emerald Isle
New Yorker article on Estonia system reckons
A tenet of the Estonian system is that an individual owns all information recorded about him or her.
What does it mean to "own" information?
If you mean you can delete it from everywhere, edit it all copies of it, restrict access to it completely then none of that applies to MyHR.
re Estonia, if you want to learn more about their approach to inperoperability look here:
https://cyber.ee/en/e-government/x-road/
"There is no central gateway or hub in X-Road. All connected organisations could communicate directly. This kind of architecture makes system more secure and reliable – no single points of failure or attack exist."
Another overseas trip for Tim to see how other people have tackled these Heath IT problems much more successfully? I doubt that he wants such evidence.
"To be fair Bernard at the time of PCEHR, such approaches where all the rage"
To be fair, right from the beginning, DOHA was given explicit in camera advice that such approaches were untested, unnecessary, and that simpler approaches to sharing data between clinical information repositories were likely to be cheaper and provide quicker runs on the board and yield tangible benefits sooner.
That simpler approach had already been formalised in the second COAG business case which was approved by COAG. Because that advice came from local folks like myself and we were contradicted by self-interested representatives of the major consultancy houses, we were not listened to, the 2nd business case quietly dropped despite approval, and the centralised PCEHR invented - with Professor Halton taking great pains to note that we were going to do things differently in Australia, because Australia was different. Sadly physics and information theory and computational complexity seem like most other pillars of modern science to apply uniformly across all nation states. My conscience is clear but my heart heavy that so much was wasted and continues to be wasted.
So please, lets us not reinvent history. I was there. This balls up that we are still paying the price for was a conscious decision of senior DOHA decision makers against the best advice of Australian experts, supported by a self-interested international IT consultancy industry.
"So please, lets us not reinvent history. I was there. This balls up that we are still paying the price for was a conscious decision of senior DOHA decision makers against the best advice of Australian experts, supported by a self-interested international IT consultancy industry."
Amen....
And let us not forget that the structure and architecture of PCEHR was borne of a pathological fear by the bureaucrats of the privacy lobby being able to mobilise an Australia Card like scare campaign against a national EHR and the need for an off the shelf solution which meant it was obsolete when started.
Let us also not forget how many experts were ignored or not asked, the non e-health driven design, the after the event recognition that the National Health Strategy needed and e-health component and the stupid implementation rush.
This dog was doomed to never be able to hunt from the outset - and made much, much worse by ill-considered political interference.
So what has changed?
David.
That the
According to the NEHTA's High Level System Architecture document they started with the Concept of Operations which fed into the Business Requirements and the Business Scenarios and Use cases.
In other word, they decided how it would work, before identifying what the requirements were.
If they had done it according to accepted Information System Architecture development methodologies they would have done what the Irish have done - business requirements/ scenarios etc first then how it should work.
The whole thing went wrong from day one and they are still suffering the consequences, which are likely to get worse, not better.
When you've dug yourself into a hole, the last thing you should do is keep digging.
The other trite saying is that it takes far more smarts to get out of a mess than what got you into it in the first place.
From ADHA PATCHING: Protecting healthcare information by updating systems and software. (pdf)
I can't work out for whom this notice is intended, but part of it seems directed at systems managers, eg.,
An incremental roll out of patches to smaller groups of users is advisable to minimise the risk of interrupting services. To assist you in determining the risks associated with the timing of applying a patch you can consult vendor bulletins or use standards such as the Common Vulnerability Scoring System (CVSS).[14] The same process can be applied to temporary workarounds that may be implemented if there are no patches available.
However, in total it reads more like a general missive that's intended to broadcast a we-told-you-so that can be deployed when the next embarrassment happens. I mean, if this notice is intended as a template for the use managements of organisations to query their IT departments, then any healthcare organisation that needs to do that is in serious strife.
How do others interpret it?
Trevor.
An amazing document. It highlights the risks and gives generic, motherhood advice. If you are a hospital or large institution, you probably don't need the advice. If you are a GP or small medical practice, you won't understand it and won't have the resources to follow the advice anyway.
It say some it is a briefing for IT professionals. As an IT professional this advice is right up there with ‘have you tried turning it off and back on again’
Shame there was not guidance on what to look for around impacts to clinical workflows or how to coordinate such activities in an interoperable scenario.
re Patching
"As the use of digital health records and internet-enabled medical devices increases, healthcare organisations have an increasing responsibility to prevent data being compromised."
I don't like the way they exclude themselves and other government agencies.
The opening paragraph has an interesting statement
One way to mitigate the risk of information being accessed is to ensure the latest versions of systems and so ware applications are being used on all devices, including digital medical equipment.
The information is a bit pointless is it cannot be accessed. I wonder if this was co-designed with any stakeholders or advisory groups?
8:17 PM, yes a word or two missing there. Perhaps some fluff might help such as - information must be available at the right time and in the right form, regardless of its origin, all the while supporting traceable provenance and control. The flow of healthcare information shadows the patient, typically starting at the point of care (doctor’s office) to pathology, pharmacies, diagnostic imaging and other care services. This accepted flow of health records transitions through an array of points where health information security must be considered and appropriate process and control implemented. Once implemented discipline management including ensure applications and system have up to date patches, applying as a minimum all recommended priority security patches, preferably undertaken by a qualified IT professional. There is a good chance one of your patients is one and would jump at the chance to repay you for you quality healthcare provided.
This should excite there privacy and security teams. What are these people up to behind closed doors
https://www.digitalhealth.gov.au/news-and-events/share-digital-health-today/share-december-2017/solving-healthcare-challenges-through-interoperability-and-artificial-intelligence
The ADHA really needs to sort out the websites they have. They are wrong on so many layers. They are not even consistently wrong. Such a low level thing to get so messy one wonders about the ADHA and its readiness for forced subscription
AI and machine learning are examples of pattern matching, using large amounts of statistical data and the patterns are used to identify characteristics of average, or cohorts of patients.
Unfortunately, patients are unique and rarely, if ever, fit the average or norm. This leads many people to believe that the future of health care is in patient centric medicine, which is based primarily upon individual, dynamic models, data associated with that patient and treatment tailored explicitly for that patient.
The two are largely incompatible. The first is useful in the context of medical science and the development of new drugs, the second is critical for the future of health care.
This focus on interoperability and AI reminds me of the observations that have been made in the past on this blog of a cargo cult mentality pervading Health IT.
I was talking to someone today who is a trained nurse/paramedic and they said that paramedics are not registered health professionals.
Tim has said: "It is a criminal offence for anyone other than a registered clinical professional to access a patient’s My Health Record".
Apart from the fact that what Tim said contradicts the myhealthrecord.gov.au website, is it correct that in an emergency, ambulance paramedics cannot legally view a patient's myhr?
It's actually a moot point because I was told that paramedics are trained to disregard or treat with suspicion anything that they cannot verify themselves, even things patients say, or have tattooed on them (e.g. blood group, DNR, allergy, etc), or have written down and carry in their wallets/purses.
It would seem that even in an emergency (which is the myhr's big selling point) the thing is pretty useless.
Can anyone confirm or comment on this?
Bernard:
COAG Health Ministers: (March 2017)
"Introduction of national registration for paramedics, including the establishment of a Paramedicine Board of Australia, with all the same powers and functions as the 14 National Boards"
I don't remember having heard it has been actioned as yet!
David.
Post a Comment