Consumers Health Forum has been funded by the Australian Digital Health Agency to run a series of free webinars on My Health Record. You can register for them here.
The webinars are just under and hour, and are available on replay on the link above. As everyone is so busy, I have watched this and include key takeaway messages which I have summarised from comments made.
- There are three options for consumers – opt in, opt out or opt in but include protections on data you don’t want to be publicly available. (Karen Carey)
- You have to make the assumption that the data you have in My Health Record may at some time be inadvertently made public and identify your own risk level and mitigate that risk by using security controls. It is not helpful to try and assuage consumer concern by talking about how high-grade the security is and that a breach will never occur. The chances are it will, so consumers need to proceed on that basis. (Karen Carey)
- Risk mitigation means considering your own personal circumstances and make sure that any relevant information is not included (Karen Carey)
- My Health Record is just a summary of the rich data that at GP or specialist may have about you – a summary page, not the whole thing (Charlotte Hespe)
- You can work with your GP on the summary – (Charlotte Hespe)
- The protections on our data and privacy over the last thirty years have been eroded, drip by drip. Policy and legislation can be altered and so we do need to be mindful of this when given assurances that our data won’t be shared with other agencies. (see point 2) (Bruce Arnold)
- These are important conversations about My Health Record but a) they should have taken place some time ago and b) they need to be with a much broader audience (Karen Carey and Bruce Arnold, various comments)
I have had a My Health Record for three years now, and when I applied you needed to have all your key documents with you and it was a cumbersome process. There was not much data on it but it is increasing. I personally feel like Facebook knows more about me that the Australian Government ever will. My Health Record is a necessary step towards simplifying our complex health system and literally saving people’s lives by the access to key information about allergies and medications. However, as it was mentioned several times in the webcast, people’s care will be impacted by certain things – mental health diagnosis, drug and alcohol history and on and on – for myself personally this is not an issue and it is important to consider your own circumstances. If in doubt, opt out.
How easy the privacy controls will be for someone with no or low literacy or minimal computer access is not really considered, as in so much of how our systems work.
Panellists:
Kim Webber – General Manager, Strategy at the Australian Digital Health Agency
Karen Carey – Consumer Advocate, former chair of CHF and Chair of the NHMRC Community and Consumer Advisory Group
Dr Bruce Baer Arnold – Assistant Professor, Law at University of Canberra and Vice-chair of the Australian Privacy Foundation Board
Dr Charlotte Hespe – GP, Glebe Family Medical Centre and RACGP Vice President
Pip Brennan, Executive Director, Health Consumers’ Council