Sunday, November 12, 2017
Blog Draft - Submission - Secondary Use Of My Health Record Data - November 2017.
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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.
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.
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.
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in the UK that resulted in the cancellation of the so called care.data program and in Australia data releases have been withdrawn after issue with the quality of anonymization were discovered.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.
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.
Comments would really help –as would disagreement of all sorts!
Posted by Dr David G More MB PhD at Sunday, November 12, 2017