I spotted this announcement a few days ago.
My Health Record: harmonised data quality assessment across the data lifecycle
Event date:
12 February 2020 - 12:00pm to 1:00pm
Location: Room 305, Level 3, Samuels Building, UNSW Upper Campus, Kensington
Open to: Open to all
Cost: Free - no booking required
Event Type: Seminar
File Attachment: Teng-Liaw_Seminar_12Feb2020.pdf
School/Unit: School of Public Health and Community Medicine, SPHCM
Booking deadline:
The My Health Record (MHR) data repository stores patient summaries uploaded from information systems of participating health services across Australia. Linked with patient-level information from various datasets, it provides a clinician- and patient-centric view of longitudinal health data. The MHR data custodian aims to support researchers and public health services with fit-for-purpose data. The MHR system requires a comprehensive DQ assessment framework that includes intrinsic, technical and contextual categories to adequately address challenges inherent in the creation and curation of data repositories derived from multiple sources. Balancing privacy and security with the FAIR Guiding Principles requires a culture of reciprocity, transparency and interoperability as well as good documentation at point of care, good data management, good data governance and good reporting. This presentation describes how the framework was developed.
About Professor Teng Liaw
Professor Liaw is a Clinician-Scientist whose research focuses on Informatics, Connected Health and Patient-Centred Care. He established the UNSW electronic Practice Based Research Network (ePBRN) to conduct research on the use of observational data from EHRs for clinical and informatics research, evaluation, audit and quality improvement activities. He has received research funding from NHMRC, ARC, research foundations and governments. He has published 200+ peer-reviewed papers on digital health; general practice, connected health, quality, data analytics; universal health coverage, vulnerable populations; social enterprise and sustainable development in cross-cultural contexts. He heads the UNSW WHO Collaborating Centre on eHealth; chairs the RACGP National Research & Evaluation Ethics Committee; and is Associate Editor of Int J Med Informatics and BMJ Health & Care Informatics. He is elected Fellow of the International Academy for Health Sciences Informatics, American College of Medical Informatics, and Australasian College of Health Informatics.
Contact for inquiries:
Ravit Danieli-Vlandis ravit@unsw.edu.au
Here is the link:
Now Teng is a good man who I have known for longer than I am prepared to admit and so I am very interested in what he has to say.
In recognising that data-quality is a vital aspect of the #myHealthRecord he is spot on.
I am interested in the views of others on the issue of if the ways the data in the #myHealthRecord has been collected and is now being held are really fit for the purposes proposed.
You can colour me pretty sceptical.
What do you think?
David.
12 comments:
Sounds like a wank to me. Is he delusional? Isn't this just a waste of time?
11:36 your colourful language is a little harsh.
I agree, the comment could be much better put!
David.
Re: "The My Health Record (MHR) data repository stores patient summaries uploaded from information systems of participating health services across Australia."
Sort of. "sometimes uploaded" and "some participating health services" are more accurate statements.
"Linked with patient-level information from various datasets, it provides a clinician- and patient-centric view of longitudinal health data. The MHR data custodian aims to support researchers and public health services with fit-for-purpose data. The MHR system requires a comprehensive DQ assessment framework that includes intrinsic, technical and contextual categories to adequately address challenges inherent in the creation and curation of data repositories derived from multiple sources."
That lot is pure intent (e.g. "aims" "requires").
It is difficult to know if myhr data is "fit-for-purpose data", if it is, it's only fit for clinical use, not "researchers and public health services", which is why the ABA has to spend time and money collecting "fit-for-purpose data" for research and public health services.
I do hope Professor Liaw is aware of all this and hasn't drunk the Kool Aid from the cup of the ADHA.
Maybe his local Library is running an education course.
@11:36 AM Sorry about the typo. Sounds like a prank to me
For a Friday funny I submit the emerging article from IT News this morning. Interesting neither Tim K or the ADHA resident professor failed to mention any of this -
My Health Record de-identified data sharing plans pushed back (IT news)
Or maybe it's because if Health did release MyHR datasets, researchers would immediately notice there is nothing of value in them.
The folk at the ABS, as part of their MADIP initiative, have probably already had a look.
This government, sports rorts and all, are as transparent as a brick wall.
The ADHA are masters of the art of kicking the can down the road.
A “citizen” in the comments section of the article asks an important question that Scotty from marketing needs to answer
10% of the population have decided that they don't want a My Health Record. Less than 10% have ever logged in.
Would it be fair to say that My Health Record is a stunning failure?
February 13, 2020 4:08 PM - all good. The predictive sex function of phones can be a real stain
Bernard, be interested in your or the privacy foundations thoughts on this default to consent model as applied under the secondary use model outline in the MyHR article. I guess at some point this needs to be tested against the privacy act(s) and principles. I am not sure if the government is this situation is any different to a private sector actor?
This assumes consent is a concern to me
Long Live T.38
These are my thoughts on consent, the APF get rather legalistic about things, IANAL.
The concept of consent, as applied to health data and its use, is a joke.
The idea that a person can grant someone or an institution consent to use their data in an informed manner is plain silly. The reality is that a person cannot be properly informed of the consequences of giving their consent. In many (most?) cases the government does not provide enough clear and readily available information for a person to make an informed decision.
e.g this is what the government tells individuals about emergency access
https://www.myhealthrecord.gov.au/for-you-your-family/howtos/emergency-access
This is what they tell healthcare providers:
https://www.myhealthrecord.gov.au/for-healthcare-professionals/howtos/emergency-access
Not quite the same thing. Once the "glass has been broken" anyone can now see the whole record. They are not supposed to but what if someone "accidentally" accesses a patient's record when the patient has set controls?
Has the patient been "fully informed"
Consent is intimately connected to trust and risk. I have never seen a model that describes the concept of consent and its relationship to specific circumstances. It falls into the same category as trust, which I mentioned last week. There's no analysis and/or understanding of what it actually means.
The government wants it this way because exploring the details of consent makes it obvious that it's actually very difficult. At one extreme is the one off, global consent approach; myhr is covered by the (IMHO) murky assumed consent approach - if you haven't opt-ed out you have given your consent.
At the other extreme, it might be a requirement that every time someone wants to access a part of your myhr you have to be given reasons and you have to give your consent and that consent only lasts for a specific time. This is a nightmare for system designers.
The joke is that the government pretends that it takes consent seriously but the reality is that they see it as an impediment and they do what they can to minimise that impediment. In that sense they are no different from the FAANG brigade.
However, the government is different - they create the law. They can legislate to make anything legal even overriding other legislation in certain circumstances. I remember reading some years ago about ATO legislation that permitted them to declare that something that didn't happpened did happen and vice versa.
When it come to secondary use of myhr data, it is highly unlikely that the government is or will be seriously breaching the law (again - IANAL). Robodebt is a case in point. The law enabled them to do what they did and was written vaguely enough so that the defence of (the equivalent of) plausible deniability can be used.
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