The Government Clearly Wants To Use Your Health Data For Things They Have Not Told You About. Who Benefits?

Spotted this the other day showing the sort of events now being run around the country:

My Health Record Secondary Use - Workshop 10 - Perth WA

Event Details

In June 2016 HealthConsult was engaged to assist the Australian Government in developing a framework for the secondary use of data in the My Health Record system for research, policy, system use, quality improvement, and evaluation activities.

Under the My Health Records Act 2012, health information in My Health Record may be collected, used and disclosed “for any purpose” with the consent of the healthcare recipient.  In addition, one of the functions of the System Operator (the Australian Digital Health Agency) is “to prepare and provide de-identified data for research and public health purposes.”  Before these provisions of the Act will be implemented, a framework for secondary use of My Health Record system data must be established.  

HealthConsult’s role is to develop a draft Framework and associated draft Implementation Plan that will facilitate the secondary uses of My Health Record system data.  HealthConsult is committed to working with stakeholders including the broader community to shape the development of the Framework.

There are 14 workshops scheduled across the country, of which this is one.  At each workshop, there will be a short presentation of the Public Consultation Paper, followed by a question and answer session, through which stakeholders can provide input. 

Here is the link:

http://www.eventbrite.com.au/e/my-health-record-secondary-use-workshop-10-perth-wa-tickets-27120201252

There are a range of issues I see that need to be resolved here:

First, given the myHR is presently a large pile of documents (many .pdfs) just how is the data to be extracted and made useable? (an example I know of is that many of the PBS records use trade names rather than standardised names for comparability)

Second how certain can we be the records will be properly anonymised and not be re-linkable?

Third what will be the involvement of properly constituted ethics committees and data anonymization experts in allowing this data access?

Fourth will citizens be told if their data is being utilised and have the right to see the data before it is used so they can deny access if they are concerned.

Fifth, given NEHTA’s and DoH’s track record of ‘pseudo consultation’ where pretty much all input is just ignored what confidence can we all have what is done will be in accord with sensible requests.

To me the threshold question will be ‘Just who does this access and research ultimately benefit?’ If the answer is the patients or citizens there may be a case for this – otherwise I, for one, will be pretty sceptical!

David.