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Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Sunday, November 12, 2017

Blog Draft - Submission - Secondary Use Of My Health Record Data - November 2017.

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Background to Submission Author.

Dr. David G More, the author of this submission, is a registered medical practitioner with an over 20 year background in Digital Health implementation and use.

Background To Submission.

On behalf of the Commonwealth Department of Health HealthConsult has been tasked with assisting to develop a “Framework for the Secondary Use of My Health Record Data”
Conceptually this framework is to enable use of the data in this system (which is identified clinical and administrative data) of the purposes of extraction, analysis and reporting on any manner of data elements held in the record for health related purposes and for the ‘public good’.
Apparently specifically excluded is use of the data ‘exclusively’ for commercial or administrative purposed but ‘mixed’ use is apparently permitted.
An example of mixed use might be the use by a for-profit drug company of the data to assist in locating individuals for a clinical trial – as recently discussed on RN’s AM.
See here:

Issues That Will Need To Be Addressed In The Final Framework.

Individual Consent
There is a general privacy principle that indicates the personal information should, in general, only be used, by anyone, for the purposes it was collected. As far as the myHR is concerned this would suggest the information held in the system is to be used for the purpose of delivering or supporting the individuals health care. Clearly using this same information for research, management etc. is unrelated to the direct care of the individual and so on is not what the data was given to the myHR for.
Data Quality
The data held in the myHR is largely held in rather old fashioned data-bases in forms where the is very little quality control and where it is held in forms that makes itvery problematic to actually search the data.
History Of Government Attempts To Misuse Health Data.
It was public opinion in the UK that resulted in the cancellation of the so called care.data program and in Australia data releases have been withdrawn after issue with the quality of anonymization were discovered. At the very least these issues should result in extreme care and caution with the use of the data or maybe have some actual experts oversee what Government does.

Proposal For Ethical Use Of Data Held In The myHR.

Given that it is important that health data be exploited (where ethically possible) for the benefit of everyone I recommend the following approach to secondary use of the data held in the myHR system. The approach also permits linkage to other relevant data sources.
1. All use of the data be as a result of a written publicly available proposal. This can be developed with the analytic entity.
2. The secondary use proposal is formally reviewed by an independent appropriately qualified and diverse expert ethics committee, and only proceeds if approved.
3. All data analysis and reporting done in house – at a small group or sole purpose entity expert in handling data extraction, linkage and analysis. NO raw data leaves the analytic entity.
4. Researchers are encouraged to work with the entity experts to conduct analysis and reporting – but no data actually leaves the Government controlled repositories.
5. All summary reports resulting from the research  / analytics  is made publicly available on a dedicated web-site which also has the research proposal and ethic committee comments.
6. The supervising analytic entity should be within Government and publicly accountable.
This approach provides maximum transparency, considerable assurance of proper use of the information, reasonable data access and high security. There can also be total public confidence in what is done being done due to mandated transparency and disclosure. Additionally since no data is actually released, except in summary report form, the need to consent is obviated.
The disadvantages may be that outcomes may take a little time and may be more costly than simply handing the data over for use (and potential misuse).
I am happy to provide more details as may be useful to assess the proposal.
(It should be noted that this submission is based on the assumption that the myHR Program proceeds as presently intended by the ADHA. I do not see this as either inevitable or positive.)
David More 11/11/2017.
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Comments would really help –as would disagreement of all sorts!
David.

9 comments:

john scott said...

David, I suggest that the Australian Institute of Health and Welfare be considered for the role of supervising entity.

It already has some of the required infrastructure and could be upgraded as required. This approach has the value of drawing on something established and with a track record as opposed to designing something new from scratch.

Dr David More MB PhD FACHI said...

Not a bad idea John - thanks...

David.

Anonymous said...

I have one simple contribution. As a registered indervidual, where exactly is the social contract for this? It was never part of conversation when I registered?

It also concerns me greatly the rumours that the ADHA as the system operator is far from distancing itself from involvement and is in fact behind closed doors actively being briefed and consulted. That to me seems wrong.

What do the privacy principles have to say on all this?

Anonymous said...

The great tragedy is privacy has been cast to the winds. The Australian Privacy Foundation present solid arguments for consideration which are never heeded. When the fox is in the chook house nothing else matters ....... if you are a chook.

Bernard Robertson-Dunn said...

As chair of the health committee of the Australian Privacy Foundation, I can say with a fair degree of confidence that we have never been consulted, although I and others have been proactive in making contributions and submissions on a range of issues from legal and privacy matters to recommendations regarding the system architecture and design.

None of our contributions or submissions have ever been heeded by the Department of Health, NEHTA or ADHA. IMHO, privacy is just seen as an obstacle to be overcome, not a right of Australians that should be respected and incorporated into everything they do.

On a personal note, before I joined the APF, I made a number of comments about the draft Concept of Operations, which were also ignored.

Michael Legg said...

While I have had some of the experience Bernard reports, I do think we would all like to see a health system capable of learning from the incidental collection of data used in its operations. This can only happen if there is community trust that there is respect for privacy combined with an openness in operation.

David, I think your suggestion is a sound and practical approach to providing the needed sunlight disinfectant!

Anonymous said...

Until "a system" exists which is trusted and proven to be useful to an individual and that person's health providers any consideration of "Secondary Use of Health Record Data" is both premature and unethical. It serves only to turn attention away from the ADHA's inability to deploy the government's system to the demonstrable satisfaction and benefit of health care professionals and their patients.

Bernard Robertson-Dunn said...

I went to the last Secondary Use consultation public forum yesterday.

I learned a couple of things:

1. They know full well that the MyHR as it exists today is totally
unsuitable as a source of data suitable for secondary use. It is full of
pdfs, does not contain atomic data, is incomplete (they didn't define
complete) and a few other observations. They expect it to change and
improve over time.

2. Nobody is going to be given access to, or permitted to download MyHR
records as they exist in the system. There may be a need to transform
and de-identify individual records and/or perform analysis on the data
before it is released. It is likely that this will be on a case-by-case
basis. This is likely to be a major task, given the nature of the data
and that healthcare provider's identifying information also needs to be
removed. Good luck doing that in a small regional centre with only one
hospital and a few doctors.

It makes you wonder about the usefulness of the system that has been built. It isn't a clinical system, it isn't suitable for secondary use and the expectation is that it will improve over time - how, is a big mystery to me given its fundamental flaws.

All the comments I've seen seem to demonstrate a lack of detailed knowledge about the data in the system and its actual workings. People are using their own interpretation of how the system is described and there is a high degree of wishful thinking. They also take statements from ADHA at face value.

The framework for secondary use may be very useful but the reality of the system may trump everything else.

One of the issues raised by the panel was trust. The system will only become useful if it is trusted by all parties. There were questions about the impact on doctors about identifiable data being released i.e. data that identifies doctors. One person in the audience made the observation that doctors feared the government using the system to assess their decisions and actions.

Considering that the government already has access to such information, MyHR is only going to add to the richness of the data, not from a clinical perspective, but from a monitoring/surveillance perspective, especially when linked to other data held by governments.

There's far more benefit to the government having access to MyHR data than the patient and/or doctors.

My guess is that the government is going to have two fights on its hands when it tries to move to opt-out. The first is with the population who might not like the government having a copy of all their health data (which may only be a perception, but perception trumps reality, in this sort of thing and it is what Tim has said publicly). The second is with doctors who could see it as an imposition on their time and a risk to their professional activities.

The fight will be all about trust.

Anonymous said...

Bernard, pragmatism and objectivity to the fore. Only one conclusion can be reached. My Health Record is a $2 Billion failed Health Department IT project being sustained by a high degree of wishful thinking.